Why Some Cancer Patients Choose Complementary and Alternative Medicine Instead of Conventional Treatment

Although noncompliance or refusal of cancer treatment is a serious concern and has been shown to reduce the effectiveness of treatment and decrease the length of survival after diagnosis,^1-4 the phenomenon itself has been scarcely studied. Existing studies report rates of less than 1% for patients refusing all treatment,⁴ 12.5% for patients refusing chemotherapy,⁵ and 20% for patients refusing treatment for hematologic malignancy.⁶ Possible reasons for noncompliance have been proposed, including patients’ fear of the adverse side effects of cancer treatment, uncertainty, hopelessness, loss of control, denial of illness, psychiatric disorders, patient-physician relationship and communication issues, and medical systems dysfunctions.^4,5,7-10

It has been hypothesized that individuals who choose complementary and alternative medicine (CAM) are more likely to forgo medical treatment than other patients.¹¹ However, studies among noncancer populations have found that only a small percentage (between 3% and 4%) rely primarily on CAM.^12-14 The few studies reporting rates of treatment refusal among cancer populations have found higher percentages (between 8% to 20%) of patients using CAM exclusively or ceasing conventional treatment in favor of CAM,^15,16 but reasons for these decisions are unclear. Primary reliance on CAM for a variety of noncancer disorders was found in one study to be associated with distrust or dissatisfaction with conventional medicine and physicians, as well as the need to seek control over health.¹² Some speculate that because of the extreme nature of most standard cancer treatment, patients may decline medical care in favor of CAM therapies that have few or no side effects.^15,17,18

In a recent qualitative study of 8 Canadian cancer patients who abandoned biomedical treatment in favor of CAM, Montbriand¹⁹ found themes of anger and fear, need for control, belief in CAM as a cure, social support for CAM, cost considerations, and mystical insights into health care. This study provided an initial understanding of the concerns of cancer patients who refuse conventional treatment and choose CAM, but is limited by its small, homogeneous sample. More diverse samples are needed to cross-validate Montbriand’s findings and to uncover additional reasons. In the following study we describe themes that emerged from interviews with a multiethnic group of 14 participants as they discuss their reasons for declining conventional cancer treatment and choosing CAM.

Methods

Recruitment

The participants in this analysis were initially surveyed by mail as part of a larger study investigating ethnic differences in alternative medicine use among cancer patients in 1995 or 1996 in Hawaii and identified through a population-based tumor registry.²⁰ Among those who returned the survey (n=1168), 439 (32%) volunteered to be interviewed. Because we were primarily interested in the diversity of experiences of CAM users, a heterogeneous group of 143 interview subjects was selected on the basis of CAM use, geographic areas, ethnicity, and cancer site. For this analysis, we included only those interview participants (n=14) who reported declining all or part of conventional treatment for cancer while simultaneously using CAM.

The mean age of participants was 52.5 (standard deviation = 14.1; range = 43-92), 9 were women, and 6 were married. The participants were white (9); Asian or Pacific Islander (5); Chinese; Filipino; Japanese; or Native Hawaiian). Participants were well educated, with the majority having past or present professional, managerial, or technical occupations. Five were retired at the time of the interview. Eight of the participants had breast cancer, and the rest had gastrointestinal cancer (3), prostate cancer (2), or skin cancer (1). Most of the participants had localized disease. The stage of disease was unknown for 4 participants, because they had declined procedures (eg, lymph node excision; exploratory surgery) to determine stage. Six participants reported that they had refused all conventional treatment (3 localized disease and 3 unstaged). Five participants reported undergoing surgery for the cancer but rejected all further treatment. Three participants had surgery and chemotherapy or radiation but reported refusing further treatment (eg, second surgery) that their physician considered necessary.

Procedure

Three human subjects research committees approved the research protocol. One- to 2-hour tape-recorded interviews were conducted in person at the participant’s home or another location in late 1998 or early 1999. All participants were compensated with a $20 gift certificate, and all gave signed informed consent.

Outcome measures

The semistructured interviews covered (a) demographics, (b) satisfaction with health care providers, (c) conventional treatments received for cancer and satisfaction, (d) types of CAM used for cancer and satisfaction, and (e) perceptions about cancer and cancer treatments.

After reading all the interview transcripts, the research team engaged in an iterative process in which we coded the text according to the nature of information, developed hypotheses and then translated the coding into categories.²¹ Responses were coded using NUD*IST 4,²² a software package for qualitative analysis. We assigned coding for: (a) reasons for rejecting conventional treatments, (b) types of CAM used, (c) reasons for choosing CAM, (d) beliefs CAM’s effectiveness, and (e) communication with physician. We included quantitative data (ie, demographics, disease characteristics, and types of CAM used) from the survey and from the tumor registry as a triangulation technique²¹ and to aid in describing the sample.

Results

All 14 participants used 3 or more types of CAM (max=14; median=8; Table 1), and all took some herbal or botanical supplement; 11 reported diet changes, and 7 used meditation or relaxation. Two participants attended CAM cancer clinics for intravenous therapy. One participant worked with a native Hawaiian healer, with whom she learned to gather and prepare traditional herbal remedies.

Three broad categories of themes emerged in the analysis: (1) beliefs about conventional treatment, (2) interactions with treatment providers, and (3) beliefs about CAM as an alternative to conventional treatment. Participants’ supporting quotes are shown in (Table 2, Table 2a)

Beliefs About Conventional Treatment

Conventional Treatment Is Harmful.. When asked to describe their reasons for declining conventional cancer treatment, participants described many ways that chemotherapy and radiation were harmful, including damaging cells, weakening the immune system, or inhibiting recovery. In the extreme, participants believed that conventional treatment would be fatal for them. Those who declined either a first (n=6) or a second (n=2) surgery commonly expressed concerns about mutilation (being “cut”) and the debilitating effects of surgery. A number of participants mentioned concerns that conventional treatment would increase their risk of future cancer. Participants also mentioned being deterred from conventional treatment by possible side effects, previous negative experience with a treatment, or knowing someone who died from the treatment.

Conventional Treatment Will Not Improve Outcome. Several patients expressed that conventional treatment was not likely to make a difference in disease outcome, either because of limitations inherent in conventional treatment or because of the particular characteristics of their disease. Often, the participants cited their belief that conventional treatment offered no complete guarantee for a cure. Although none of the participants disputed the validity of their cancer diagnosis, a few participants believed that cancer treatment was unnecessary because the cancer had been eliminated by initial treatment. One participant proposed that fate, not treatment, would decide her disease outcome.

Interactions with Treatment Providers

Nearly all participants (12 out of 14) stated that they had informed at least one of their physicians about CAM, and 2 had not. Nine respondents reported that their physicians were either supportive or neutral about their use of CAM. In the context of participants’ decision making about conventional treatment, participants expressed that they felt physicians could not be trusted, that physcians did not listen to their needs, and that medical professionals were hostile or threatening about participants’ treatment choices. Participants’ responses also indicated possible missed chances for communication between patient and physician about both conventional treatment and CAM. A minority of participants described feeling alienated from the medical community.

Beliefs About CAM as Alternative to Conventional Treatment

CAM Contributed to Decision to Decline. The perception that CAM offered a feasible alternative to conventional treatment appeared to assist participants in making the decision to go against their physicians’ recommendations. In 6 cases, the actual decision to refuse conventional treatment appeared to be facilitated by the discovery or knowledge of CAM.

CAM Is Better than Conventional Treatment. In many cases, the CAM choice was perceived to be considerably less aversive than the conventional treatment option or was perceived to make more “intuitive” sense. A common viewpoint expressed by participants was that conventional treatment and CAM have different methods and purposes. Participants pointed out that CAM works with the body’s own resources in a natural way to promote healing, while conventional treatment is short-sighted and merely attacks the symptom without addressing underlying imbalances.

CAM Is Effective. In choosing CAM as an alternative to conventional treatment, the participants stated that they were satisfied with CAM’s effectiveness and described sources of evidence for this, including personal evidence (most frequently cited), medical and anecdotal evidence, and belief. Participants’ personal experience of continuing to be alive, feeling well, or having subjective improvement in symptoms was proof for them that a particular CAM treatment worked. Participants also used medical evidence (eg, PSA tests or mammography) to demonstrate that their condition was improved and attributed this to the CAM. Anecdotal evidence based on others’ reported benefits from CAM was sufficient for at least one participant to state that she felt CAM was effective. A number of participants stated that they did not have any demonstrable evidence of the effectiveness of CAM, such as improved, symptoms or medical evidence, but that they nonetheless continued to believe that CAM was working for them. Participants’ reasoning included statements about how the particular CAM made logical sense to them and therefore “must work,” or that they had a long history of belief in the benefits of CAM. Only one participant admitted that she was not sure if CAM had helped her.

Discussion

A predominant theme in our analysis was the finding that participants perceived CAM to be a harmless, natural, and effective alternative to the damaging effects of conventional cancer treatment. In the participants’ views, conventional treatment offered no guarantee of a cure, while guaranteeing almost certain harm and for some, possible death. Participants felt that CAM had a positive effect on their overall health and, with a few exceptions, participants were confident in CAM’s ability to cure their cancer or prevent recurrence. The quality of physician/patient communication was also a factor in the decision of participants to decline conventional treatment. While participants reported both positive and negative experiences with medical staff, the more negative perceptions, including distrust, lack of response, and perceived hostility from health care providers, possibly caused further alienation between participants and the medical community.

A study by Astin reported similar predictors for primary reliance on CAM in the general population (lack of trust and dissatisfaction with conventional treatment and providers, and belief in the efficacy of CAM).¹² Astin also observed that CAM was perceived as promoting health, while conventional treatment focused on the illness, a belief expressed by several of our participants. While the desire for control over health was a predictor in Astin’s study, this did not emerge as a theme in our analysis.

Our analysis provides cross-validity evidence with an ethnically diverse sample for several themes observed by Montbriand¹⁹ (difficulty in communication with health care providers, previous negative experiences with medical care, belief in a cure from CAM, and lack of hope for a cure offered by biomedical therapies). Montbriand’s themes of expressed stress, the need of patients to take control of treatment, and mystical insights into health care also appear to have some similarities to our results, while the influence of social support and cost considerations on CAM use were not as evident in our analysis. Also, unlike the Montbriand study, our participants reported supportive as well as negative health care interactions regarding CAM use, sources of evidence for CAM’s effectiveness (personal, medical, anecdotal, and belief), and the belief that CAM offered an opportunity to avoid the harmful effects of conventional treatment.

The preceding analysis is qualitative and based on the self-report of a small sample of 14 participants. Generalizability of the findings is therefore limited. However, the use of a qualitative method allowed investigation of a relatively rare population (cancer treatment decliners) that is seldom studied. The results are also limited by the fact that participants were primarily cancer survivors in relatively good health.

Future research should include participants with more advanced cancers, as compliance with treatment may be dependent on the patients’ expectation of the likely progression of their disease.²³

Our findings have a number of clinical implications. Given some of the examples of interactions with medical professionals, it is possible that the participants did not fully understand their treatment options, including their chances of experiencing serious or debilitating consequences of conventional treatment, and may have overestimated such consequences. A better understanding of individual patients’ concerns about conventional treatment can guide how health care professionals in framing recommendations when talking to patients. While patients should be made as aware as possible of the pros and cons of all options for cancer treatment, including conventional methods, CAM, or no treatment, patient education efforts alone are not sufficient. Our findings, as well as those of Montbriand,¹⁹ indicate that fear and anxiety may be issues for patients who decline conventional treatment in favor of CAM. Some patients may require psychological and health behavior interventions aimed at improved adjustment and better coping with cancer, as well as addressing the motivational and emotional barriers to compliance. And finally, treatment decision making is an ongoing process, treatment decliners may choose conventional cancer treatment at a later date if given the adequate support, information, and time necessary to make the decision.²³ Even if patients have declined oncologic care, they may continue to see their primary care and family physicians. Patients need to feel that they have not been permanently excluded from the health care system even if they make choices that are contrary to the recommendations of their medical team.

Acknowledgments

We want to thank all participants for taking the time and effort to respond to our questionnaire and to participate in the interviews. The help of Marc Goodman, PhD, and the staff of the Hawaii Tumor registry is greatly appreciated. We would also like to thank our research team, including Professor Thomas Maretzki, Yvonne Tatsumura, Katsuya Tasaki, Tammy Brown, Carole Prism, and David Henderson for their help with transcription and analysis. This research was supported by a special study grant from the National Cancer Institute, Surveillance, Epidemiology, and End Results program under contract number N01-PC67001.

Although noncompliance or refusal of cancer treatment is a serious concern and has been shown to reduce the effectiveness of treatment and decrease the length of survival after diagnosis,^1-4 the phenomenon itself has been scarcely studied. Existing studies report rates of less than 1% for patients refusing all treatment,⁴ 12.5% for patients refusing chemotherapy,⁵ and 20% for patients refusing treatment for hematologic malignancy.⁶ Possible reasons for noncompliance have been proposed, including patients’ fear of the adverse side effects of cancer treatment, uncertainty, hopelessness, loss of control, denial of illness, psychiatric disorders, patient-physician relationship and communication issues, and medical systems dysfunctions.^4,5,7-10

It has been hypothesized that individuals who choose complementary and alternative medicine (CAM) are more likely to forgo medical treatment than other patients.¹¹ However, studies among noncancer populations have found that only a small percentage (between 3% and 4%) rely primarily on CAM.^12-14 The few studies reporting rates of treatment refusal among cancer populations have found higher percentages (between 8% to 20%) of patients using CAM exclusively or ceasing conventional treatment in favor of CAM,^15,16 but reasons for these decisions are unclear. Primary reliance on CAM for a variety of noncancer disorders was found in one study to be associated with distrust or dissatisfaction with conventional medicine and physicians, as well as the need to seek control over health.¹² Some speculate that because of the extreme nature of most standard cancer treatment, patients may decline medical care in favor of CAM therapies that have few or no side effects.^15,17,18

In a recent qualitative study of 8 Canadian cancer patients who abandoned biomedical treatment in favor of CAM, Montbriand¹⁹ found themes of anger and fear, need for control, belief in CAM as a cure, social support for CAM, cost considerations, and mystical insights into health care. This study provided an initial understanding of the concerns of cancer patients who refuse conventional treatment and choose CAM, but is limited by its small, homogeneous sample. More diverse samples are needed to cross-validate Montbriand’s findings and to uncover additional reasons. In the following study we describe themes that emerged from interviews with a multiethnic group of 14 participants as they discuss their reasons for declining conventional cancer treatment and choosing CAM.

Methods

Recruitment

The participants in this analysis were initially surveyed by mail as part of a larger study investigating ethnic differences in alternative medicine use among cancer patients in 1995 or 1996 in Hawaii and identified through a population-based tumor registry.²⁰ Among those who returned the survey (n=1168), 439 (32%) volunteered to be interviewed. Because we were primarily interested in the diversity of experiences of CAM users, a heterogeneous group of 143 interview subjects was selected on the basis of CAM use, geographic areas, ethnicity, and cancer site. For this analysis, we included only those interview participants (n=14) who reported declining all or part of conventional treatment for cancer while simultaneously using CAM.

The mean age of participants was 52.5 (standard deviation = 14.1; range = 43-92), 9 were women, and 6 were married. The participants were white (9); Asian or Pacific Islander (5); Chinese; Filipino; Japanese; or Native Hawaiian). Participants were well educated, with the majority having past or present professional, managerial, or technical occupations. Five were retired at the time of the interview. Eight of the participants had breast cancer, and the rest had gastrointestinal cancer (3), prostate cancer (2), or skin cancer (1). Most of the participants had localized disease. The stage of disease was unknown for 4 participants, because they had declined procedures (eg, lymph node excision; exploratory surgery) to determine stage. Six participants reported that they had refused all conventional treatment (3 localized disease and 3 unstaged). Five participants reported undergoing surgery for the cancer but rejected all further treatment. Three participants had surgery and chemotherapy or radiation but reported refusing further treatment (eg, second surgery) that their physician considered necessary.

Procedure

Three human subjects research committees approved the research protocol. One- to 2-hour tape-recorded interviews were conducted in person at the participant’s home or another location in late 1998 or early 1999. All participants were compensated with a $20 gift certificate, and all gave signed informed consent.

Outcome measures

The semistructured interviews covered (a) demographics, (b) satisfaction with health care providers, (c) conventional treatments received for cancer and satisfaction, (d) types of CAM used for cancer and satisfaction, and (e) perceptions about cancer and cancer treatments.

After reading all the interview transcripts, the research team engaged in an iterative process in which we coded the text according to the nature of information, developed hypotheses and then translated the coding into categories.²¹ Responses were coded using NUD*IST 4,²² a software package for qualitative analysis. We assigned coding for: (a) reasons for rejecting conventional treatments, (b) types of CAM used, (c) reasons for choosing CAM, (d) beliefs CAM’s effectiveness, and (e) communication with physician. We included quantitative data (ie, demographics, disease characteristics, and types of CAM used) from the survey and from the tumor registry as a triangulation technique²¹ and to aid in describing the sample.

Results

All 14 participants used 3 or more types of CAM (max=14; median=8; Table 1), and all took some herbal or botanical supplement; 11 reported diet changes, and 7 used meditation or relaxation. Two participants attended CAM cancer clinics for intravenous therapy. One participant worked with a native Hawaiian healer, with whom she learned to gather and prepare traditional herbal remedies.

Three broad categories of themes emerged in the analysis: (1) beliefs about conventional treatment, (2) interactions with treatment providers, and (3) beliefs about CAM as an alternative to conventional treatment. Participants’ supporting quotes are shown in (Table 2, Table 2a)

Beliefs About Conventional Treatment

Conventional Treatment Is Harmful.. When asked to describe their reasons for declining conventional cancer treatment, participants described many ways that chemotherapy and radiation were harmful, including damaging cells, weakening the immune system, or inhibiting recovery. In the extreme, participants believed that conventional treatment would be fatal for them. Those who declined either a first (n=6) or a second (n=2) surgery commonly expressed concerns about mutilation (being “cut”) and the debilitating effects of surgery. A number of participants mentioned concerns that conventional treatment would increase their risk of future cancer. Participants also mentioned being deterred from conventional treatment by possible side effects, previous negative experience with a treatment, or knowing someone who died from the treatment.

Conventional Treatment Will Not Improve Outcome. Several patients expressed that conventional treatment was not likely to make a difference in disease outcome, either because of limitations inherent in conventional treatment or because of the particular characteristics of their disease. Often, the participants cited their belief that conventional treatment offered no complete guarantee for a cure. Although none of the participants disputed the validity of their cancer diagnosis, a few participants believed that cancer treatment was unnecessary because the cancer had been eliminated by initial treatment. One participant proposed that fate, not treatment, would decide her disease outcome.

Interactions with Treatment Providers

Nearly all participants (12 out of 14) stated that they had informed at least one of their physicians about CAM, and 2 had not. Nine respondents reported that their physicians were either supportive or neutral about their use of CAM. In the context of participants’ decision making about conventional treatment, participants expressed that they felt physicians could not be trusted, that physcians did not listen to their needs, and that medical professionals were hostile or threatening about participants’ treatment choices. Participants’ responses also indicated possible missed chances for communication between patient and physician about both conventional treatment and CAM. A minority of participants described feeling alienated from the medical community.

Beliefs About CAM as Alternative to Conventional Treatment

CAM Contributed to Decision to Decline. The perception that CAM offered a feasible alternative to conventional treatment appeared to assist participants in making the decision to go against their physicians’ recommendations. In 6 cases, the actual decision to refuse conventional treatment appeared to be facilitated by the discovery or knowledge of CAM.

CAM Is Better than Conventional Treatment. In many cases, the CAM choice was perceived to be considerably less aversive than the conventional treatment option or was perceived to make more “intuitive” sense. A common viewpoint expressed by participants was that conventional treatment and CAM have different methods and purposes. Participants pointed out that CAM works with the body’s own resources in a natural way to promote healing, while conventional treatment is short-sighted and merely attacks the symptom without addressing underlying imbalances.

CAM Is Effective. In choosing CAM as an alternative to conventional treatment, the participants stated that they were satisfied with CAM’s effectiveness and described sources of evidence for this, including personal evidence (most frequently cited), medical and anecdotal evidence, and belief. Participants’ personal experience of continuing to be alive, feeling well, or having subjective improvement in symptoms was proof for them that a particular CAM treatment worked. Participants also used medical evidence (eg, PSA tests or mammography) to demonstrate that their condition was improved and attributed this to the CAM. Anecdotal evidence based on others’ reported benefits from CAM was sufficient for at least one participant to state that she felt CAM was effective. A number of participants stated that they did not have any demonstrable evidence of the effectiveness of CAM, such as improved, symptoms or medical evidence, but that they nonetheless continued to believe that CAM was working for them. Participants’ reasoning included statements about how the particular CAM made logical sense to them and therefore “must work,” or that they had a long history of belief in the benefits of CAM. Only one participant admitted that she was not sure if CAM had helped her.

Discussion

A predominant theme in our analysis was the finding that participants perceived CAM to be a harmless, natural, and effective alternative to the damaging effects of conventional cancer treatment. In the participants’ views, conventional treatment offered no guarantee of a cure, while guaranteeing almost certain harm and for some, possible death. Participants felt that CAM had a positive effect on their overall health and, with a few exceptions, participants were confident in CAM’s ability to cure their cancer or prevent recurrence. The quality of physician/patient communication was also a factor in the decision of participants to decline conventional treatment. While participants reported both positive and negative experiences with medical staff, the more negative perceptions, including distrust, lack of response, and perceived hostility from health care providers, possibly caused further alienation between participants and the medical community.

A study by Astin reported similar predictors for primary reliance on CAM in the general population (lack of trust and dissatisfaction with conventional treatment and providers, and belief in the efficacy of CAM).¹² Astin also observed that CAM was perceived as promoting health, while conventional treatment focused on the illness, a belief expressed by several of our participants. While the desire for control over health was a predictor in Astin’s study, this did not emerge as a theme in our analysis.

Our analysis provides cross-validity evidence with an ethnically diverse sample for several themes observed by Montbriand¹⁹ (difficulty in communication with health care providers, previous negative experiences with medical care, belief in a cure from CAM, and lack of hope for a cure offered by biomedical therapies). Montbriand’s themes of expressed stress, the need of patients to take control of treatment, and mystical insights into health care also appear to have some similarities to our results, while the influence of social support and cost considerations on CAM use were not as evident in our analysis. Also, unlike the Montbriand study, our participants reported supportive as well as negative health care interactions regarding CAM use, sources of evidence for CAM’s effectiveness (personal, medical, anecdotal, and belief), and the belief that CAM offered an opportunity to avoid the harmful effects of conventional treatment.

The preceding analysis is qualitative and based on the self-report of a small sample of 14 participants. Generalizability of the findings is therefore limited. However, the use of a qualitative method allowed investigation of a relatively rare population (cancer treatment decliners) that is seldom studied. The results are also limited by the fact that participants were primarily cancer survivors in relatively good health.

Future research should include participants with more advanced cancers, as compliance with treatment may be dependent on the patients’ expectation of the likely progression of their disease.²³

Our findings have a number of clinical implications. Given some of the examples of interactions with medical professionals, it is possible that the participants did not fully understand their treatment options, including their chances of experiencing serious or debilitating consequences of conventional treatment, and may have overestimated such consequences. A better understanding of individual patients’ concerns about conventional treatment can guide how health care professionals in framing recommendations when talking to patients. While patients should be made as aware as possible of the pros and cons of all options for cancer treatment, including conventional methods, CAM, or no treatment, patient education efforts alone are not sufficient. Our findings, as well as those of Montbriand,¹⁹ indicate that fear and anxiety may be issues for patients who decline conventional treatment in favor of CAM. Some patients may require psychological and health behavior interventions aimed at improved adjustment and better coping with cancer, as well as addressing the motivational and emotional barriers to compliance. And finally, treatment decision making is an ongoing process, treatment decliners may choose conventional cancer treatment at a later date if given the adequate support, information, and time necessary to make the decision.²³ Even if patients have declined oncologic care, they may continue to see their primary care and family physicians. Patients need to feel that they have not been permanently excluded from the health care system even if they make choices that are contrary to the recommendations of their medical team.

Acknowledgments

We want to thank all participants for taking the time and effort to respond to our questionnaire and to participate in the interviews. The help of Marc Goodman, PhD, and the staff of the Hawaii Tumor registry is greatly appreciated. We would also like to thank our research team, including Professor Thomas Maretzki, Yvonne Tatsumura, Katsuya Tasaki, Tammy Brown, Carole Prism, and David Henderson for their help with transcription and analysis. This research was supported by a special study grant from the National Cancer Institute, Surveillance, Epidemiology, and End Results program under contract number N01-PC67001.

Although noncompliance or refusal of cancer treatment is a serious concern and has been shown to reduce the effectiveness of treatment and decrease the length of survival after diagnosis,^1-4 the phenomenon itself has been scarcely studied. Existing studies report rates of less than 1% for patients refusing all treatment,⁴ 12.5% for patients refusing chemotherapy,⁵ and 20% for patients refusing treatment for hematologic malignancy.⁶ Possible reasons for noncompliance have been proposed, including patients’ fear of the adverse side effects of cancer treatment, uncertainty, hopelessness, loss of control, denial of illness, psychiatric disorders, patient-physician relationship and communication issues, and medical systems dysfunctions.^4,5,7-10

It has been hypothesized that individuals who choose complementary and alternative medicine (CAM) are more likely to forgo medical treatment than other patients.¹¹ However, studies among noncancer populations have found that only a small percentage (between 3% and 4%) rely primarily on CAM.^12-14 The few studies reporting rates of treatment refusal among cancer populations have found higher percentages (between 8% to 20%) of patients using CAM exclusively or ceasing conventional treatment in favor of CAM,^15,16 but reasons for these decisions are unclear. Primary reliance on CAM for a variety of noncancer disorders was found in one study to be associated with distrust or dissatisfaction with conventional medicine and physicians, as well as the need to seek control over health.¹² Some speculate that because of the extreme nature of most standard cancer treatment, patients may decline medical care in favor of CAM therapies that have few or no side effects.^15,17,18

In a recent qualitative study of 8 Canadian cancer patients who abandoned biomedical treatment in favor of CAM, Montbriand¹⁹ found themes of anger and fear, need for control, belief in CAM as a cure, social support for CAM, cost considerations, and mystical insights into health care. This study provided an initial understanding of the concerns of cancer patients who refuse conventional treatment and choose CAM, but is limited by its small, homogeneous sample. More diverse samples are needed to cross-validate Montbriand’s findings and to uncover additional reasons. In the following study we describe themes that emerged from interviews with a multiethnic group of 14 participants as they discuss their reasons for declining conventional cancer treatment and choosing CAM.

Methods

Recruitment

The participants in this analysis were initially surveyed by mail as part of a larger study investigating ethnic differences in alternative medicine use among cancer patients in 1995 or 1996 in Hawaii and identified through a population-based tumor registry.²⁰ Among those who returned the survey (n=1168), 439 (32%) volunteered to be interviewed. Because we were primarily interested in the diversity of experiences of CAM users, a heterogeneous group of 143 interview subjects was selected on the basis of CAM use, geographic areas, ethnicity, and cancer site. For this analysis, we included only those interview participants (n=14) who reported declining all or part of conventional treatment for cancer while simultaneously using CAM.

The mean age of participants was 52.5 (standard deviation = 14.1; range = 43-92), 9 were women, and 6 were married. The participants were white (9); Asian or Pacific Islander (5); Chinese; Filipino; Japanese; or Native Hawaiian). Participants were well educated, with the majority having past or present professional, managerial, or technical occupations. Five were retired at the time of the interview. Eight of the participants had breast cancer, and the rest had gastrointestinal cancer (3), prostate cancer (2), or skin cancer (1). Most of the participants had localized disease. The stage of disease was unknown for 4 participants, because they had declined procedures (eg, lymph node excision; exploratory surgery) to determine stage. Six participants reported that they had refused all conventional treatment (3 localized disease and 3 unstaged). Five participants reported undergoing surgery for the cancer but rejected all further treatment. Three participants had surgery and chemotherapy or radiation but reported refusing further treatment (eg, second surgery) that their physician considered necessary.

Procedure

Three human subjects research committees approved the research protocol. One- to 2-hour tape-recorded interviews were conducted in person at the participant’s home or another location in late 1998 or early 1999. All participants were compensated with a $20 gift certificate, and all gave signed informed consent.

Outcome measures

The semistructured interviews covered (a) demographics, (b) satisfaction with health care providers, (c) conventional treatments received for cancer and satisfaction, (d) types of CAM used for cancer and satisfaction, and (e) perceptions about cancer and cancer treatments.

After reading all the interview transcripts, the research team engaged in an iterative process in which we coded the text according to the nature of information, developed hypotheses and then translated the coding into categories.²¹ Responses were coded using NUD*IST 4,²² a software package for qualitative analysis. We assigned coding for: (a) reasons for rejecting conventional treatments, (b) types of CAM used, (c) reasons for choosing CAM, (d) beliefs CAM’s effectiveness, and (e) communication with physician. We included quantitative data (ie, demographics, disease characteristics, and types of CAM used) from the survey and from the tumor registry as a triangulation technique²¹ and to aid in describing the sample.

Results

All 14 participants used 3 or more types of CAM (max=14; median=8; Table 1), and all took some herbal or botanical supplement; 11 reported diet changes, and 7 used meditation or relaxation. Two participants attended CAM cancer clinics for intravenous therapy. One participant worked with a native Hawaiian healer, with whom she learned to gather and prepare traditional herbal remedies.

Three broad categories of themes emerged in the analysis: (1) beliefs about conventional treatment, (2) interactions with treatment providers, and (3) beliefs about CAM as an alternative to conventional treatment. Participants’ supporting quotes are shown in (Table 2, Table 2a)

Beliefs About Conventional Treatment

Conventional Treatment Is Harmful.. When asked to describe their reasons for declining conventional cancer treatment, participants described many ways that chemotherapy and radiation were harmful, including damaging cells, weakening the immune system, or inhibiting recovery. In the extreme, participants believed that conventional treatment would be fatal for them. Those who declined either a first (n=6) or a second (n=2) surgery commonly expressed concerns about mutilation (being “cut”) and the debilitating effects of surgery. A number of participants mentioned concerns that conventional treatment would increase their risk of future cancer. Participants also mentioned being deterred from conventional treatment by possible side effects, previous negative experience with a treatment, or knowing someone who died from the treatment.

Conventional Treatment Will Not Improve Outcome. Several patients expressed that conventional treatment was not likely to make a difference in disease outcome, either because of limitations inherent in conventional treatment or because of the particular characteristics of their disease. Often, the participants cited their belief that conventional treatment offered no complete guarantee for a cure. Although none of the participants disputed the validity of their cancer diagnosis, a few participants believed that cancer treatment was unnecessary because the cancer had been eliminated by initial treatment. One participant proposed that fate, not treatment, would decide her disease outcome.

Interactions with Treatment Providers

Nearly all participants (12 out of 14) stated that they had informed at least one of their physicians about CAM, and 2 had not. Nine respondents reported that their physicians were either supportive or neutral about their use of CAM. In the context of participants’ decision making about conventional treatment, participants expressed that they felt physicians could not be trusted, that physcians did not listen to their needs, and that medical professionals were hostile or threatening about participants’ treatment choices. Participants’ responses also indicated possible missed chances for communication between patient and physician about both conventional treatment and CAM. A minority of participants described feeling alienated from the medical community.

Beliefs About CAM as Alternative to Conventional Treatment

CAM Contributed to Decision to Decline. The perception that CAM offered a feasible alternative to conventional treatment appeared to assist participants in making the decision to go against their physicians’ recommendations. In 6 cases, the actual decision to refuse conventional treatment appeared to be facilitated by the discovery or knowledge of CAM.

CAM Is Better than Conventional Treatment. In many cases, the CAM choice was perceived to be considerably less aversive than the conventional treatment option or was perceived to make more “intuitive” sense. A common viewpoint expressed by participants was that conventional treatment and CAM have different methods and purposes. Participants pointed out that CAM works with the body’s own resources in a natural way to promote healing, while conventional treatment is short-sighted and merely attacks the symptom without addressing underlying imbalances.

CAM Is Effective. In choosing CAM as an alternative to conventional treatment, the participants stated that they were satisfied with CAM’s effectiveness and described sources of evidence for this, including personal evidence (most frequently cited), medical and anecdotal evidence, and belief. Participants’ personal experience of continuing to be alive, feeling well, or having subjective improvement in symptoms was proof for them that a particular CAM treatment worked. Participants also used medical evidence (eg, PSA tests or mammography) to demonstrate that their condition was improved and attributed this to the CAM. Anecdotal evidence based on others’ reported benefits from CAM was sufficient for at least one participant to state that she felt CAM was effective. A number of participants stated that they did not have any demonstrable evidence of the effectiveness of CAM, such as improved, symptoms or medical evidence, but that they nonetheless continued to believe that CAM was working for them. Participants’ reasoning included statements about how the particular CAM made logical sense to them and therefore “must work,” or that they had a long history of belief in the benefits of CAM. Only one participant admitted that she was not sure if CAM had helped her.

Discussion

A predominant theme in our analysis was the finding that participants perceived CAM to be a harmless, natural, and effective alternative to the damaging effects of conventional cancer treatment. In the participants’ views, conventional treatment offered no guarantee of a cure, while guaranteeing almost certain harm and for some, possible death. Participants felt that CAM had a positive effect on their overall health and, with a few exceptions, participants were confident in CAM’s ability to cure their cancer or prevent recurrence. The quality of physician/patient communication was also a factor in the decision of participants to decline conventional treatment. While participants reported both positive and negative experiences with medical staff, the more negative perceptions, including distrust, lack of response, and perceived hostility from health care providers, possibly caused further alienation between participants and the medical community.

A study by Astin reported similar predictors for primary reliance on CAM in the general population (lack of trust and dissatisfaction with conventional treatment and providers, and belief in the efficacy of CAM).¹² Astin also observed that CAM was perceived as promoting health, while conventional treatment focused on the illness, a belief expressed by several of our participants. While the desire for control over health was a predictor in Astin’s study, this did not emerge as a theme in our analysis.

Our analysis provides cross-validity evidence with an ethnically diverse sample for several themes observed by Montbriand¹⁹ (difficulty in communication with health care providers, previous negative experiences with medical care, belief in a cure from CAM, and lack of hope for a cure offered by biomedical therapies). Montbriand’s themes of expressed stress, the need of patients to take control of treatment, and mystical insights into health care also appear to have some similarities to our results, while the influence of social support and cost considerations on CAM use were not as evident in our analysis. Also, unlike the Montbriand study, our participants reported supportive as well as negative health care interactions regarding CAM use, sources of evidence for CAM’s effectiveness (personal, medical, anecdotal, and belief), and the belief that CAM offered an opportunity to avoid the harmful effects of conventional treatment.

The preceding analysis is qualitative and based on the self-report of a small sample of 14 participants. Generalizability of the findings is therefore limited. However, the use of a qualitative method allowed investigation of a relatively rare population (cancer treatment decliners) that is seldom studied. The results are also limited by the fact that participants were primarily cancer survivors in relatively good health.

Future research should include participants with more advanced cancers, as compliance with treatment may be dependent on the patients’ expectation of the likely progression of their disease.²³

Our findings have a number of clinical implications. Given some of the examples of interactions with medical professionals, it is possible that the participants did not fully understand their treatment options, including their chances of experiencing serious or debilitating consequences of conventional treatment, and may have overestimated such consequences. A better understanding of individual patients’ concerns about conventional treatment can guide how health care professionals in framing recommendations when talking to patients. While patients should be made as aware as possible of the pros and cons of all options for cancer treatment, including conventional methods, CAM, or no treatment, patient education efforts alone are not sufficient. Our findings, as well as those of Montbriand,¹⁹ indicate that fear and anxiety may be issues for patients who decline conventional treatment in favor of CAM. Some patients may require psychological and health behavior interventions aimed at improved adjustment and better coping with cancer, as well as addressing the motivational and emotional barriers to compliance. And finally, treatment decision making is an ongoing process, treatment decliners may choose conventional cancer treatment at a later date if given the adequate support, information, and time necessary to make the decision.²³ Even if patients have declined oncologic care, they may continue to see their primary care and family physicians. Patients need to feel that they have not been permanently excluded from the health care system even if they make choices that are contrary to the recommendations of their medical team.

Acknowledgments

We want to thank all participants for taking the time and effort to respond to our questionnaire and to participate in the interviews. The help of Marc Goodman, PhD, and the staff of the Hawaii Tumor registry is greatly appreciated. We would also like to thank our research team, including Professor Thomas Maretzki, Yvonne Tatsumura, Katsuya Tasaki, Tammy Brown, Carole Prism, and David Henderson for their help with transcription and analysis. This research was supported by a special study grant from the National Cancer Institute, Surveillance, Epidemiology, and End Results program under contract number N01-PC67001.