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

,

Original Research

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

J Fam Pract. 2001 December;50(12):1067

By

Dianne M. Shumay, MA

References

1. Hoagland AC, Morrow GR, Bennett JM, Carnrike CL, Jr. Oncologists’ views of cancer patient noncompliance. Am J Clin Onc 1983;6:239-44.

2. Li BD, Brown WA, Ampil FL, Burton GV, Yu H, McDonald JC. Patient compliance is critical for equivalent clinical outcomes for breast cancer treated by breast-conservation therapy. Ann Surg 2000;231:883-89.

3. Bonadonna G, Valagussa P. Dose-response effect of adjuvant chemotherapy in breast cancer. N Engl J Med 1981;304:10-15.

4. Huchcroft SA, Snodgrass T. Cancer patients who refuse treatment. Cancer Causes Cont 1993;4:179-85.

5. Levin M, Mermelstein H, Rigberg C. Factors associated with acceptance or rejection of recommendation for chemotherapy in a community cancer center. Cancer Nurs 1999;22:246-50.

6. Evans SH, Clarke P. When cancer patients fail to get well: flaws in health communication. Beverly Hills, Calif:. Sage Publications; 1983;225-48.

7. Richardson JL, Sanchez K. Compliance with cancer treatment. In: Holland JC, ed. Psychoonc. New York, NY: Oxford University Press; 1998;67-77.

8. Kunkel EJ, Woods CM, Rodgers C, Myers RE. Consultations for ‘maladaptive denial of illness’ in patients with cancer: psychiatric disorders that result in noncompliance. Psychoonc 1997;6:139-49.

9. Goldberg RJ. Systematic understanding of cancer patients who refuse treatment. Psychother Psychosom 1983;39:180-89.

10. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250:1296-301.

11. Lowenthal RM. Alternative cancer treatments. Med J Aust 1996;165:536-37.

12. Astin JA. Why patients use alternative medicine: results of a national study. JAMA 1998;279:1548-53.

13. Eisenberg DM, Kessler RC, Foster C, Norlock FE, Calkins DR, Delbanco TL. Unconventional medicine in the United States: prevalence, costs, and patterns of use. N Engl J Med 1993;328:246-52.

14. Eisenberg DM, Davis RB, Ettner SL, et al. Trends in alternative medicine use in the United States, 1990-1997: results of a follow-up national survey. JAMA 1998;280:1569-75.

15. Cassileth BR, Lusk EJ, Strouse TB, Bodenheimer BJ. Contemporary unorthodox treatments in cancer medicine: a study of patients, treatments, and practitioners. Ann Intern Med 1984;101:105-12.

16. Lerner IJ, Kennedy BJ. The prevalence of questionable methods of cancer treatment in the United States. CA Cancer J Clin 1992;42:181-91.

17. Jenkins CA, Scarfe A, Bruera E. Integration of palliative care with alternative medicine in patients who have refused curative cancer therapy: a report of two cases. J Pall Care 1998;14:55-59.

18. Downer SM, Cody MM, McCluskey P, et al. Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. BMJ 1994;309:86-89.

19. Montbriand MJ. Abandoning biomedicine for alternate therapies: oncology patients’ stories. Cancer Nursing 1998;21:36-45.

20. Maskarinec G, Shumay DM, Kakai H, Gotay CC. Ethnic differences in complementary and alternative medicine use among cancer patients. J Altern Complement Med 2000;6:531-38.

21. Bogdan R, Biklin S. Qualitative research in education. Boston, Mass: Allyn and Bacon; 1998.

22. Qualitative Solutions and Research Pty Ltd. QSR NUD*IST 4 user guide. Australia: Sage Publications, 1997.

23. Gotay CC, Bultz BD. Patient decision making inside and outside the cancer care system. J Psychosoc Onc 1986;4:105-14.

24. Cassileth BR. The alternative medicine handbook: The complete reference guide to alternative and complementary therapies. New York, NY: W.W. Norton & Company Inc, 1998.

OBJECTIVES: We examined cancer patients’ reasons for declining all or part of recommended cancer treatment and choosing complementary and alternative medicine (CAM).

STUDY DESIGN: This was a qualitative interview study.

POPULATION: Fourteen cancer survivors who reported having declined all or part of the recommended conventional treatment (surgery, chemotherapy, or radiation) were included. The participants were a subset from a multi-ethnic (Asian, Native Hawaiian, and white) group of 143 adults with cancer in 1995 or 1996 who were recruited through a population-based tumor registry and interviewed about CAM.

OUTCOMES MEASURED: We performed semistructured interviews regarding experience with conventional cancer treatment and providers, use of CAM, and beliefs about disease.

RESULTS: All participants used 3 or more types of CAM, most commonly herbal or nutritional supplements. Across the board, participants stated that their reason for declining conventional treatment was to avoid damage or harm to the body. The majority of participants also felt that conventional treatment would not make a difference in disease outcome, and some but not all participants perceived an unsatisfactory or alienating relationship with health care providers. Some participants reported that their discovery of CAM contributed to their decision to decline conventional treatment, and participants generally perceived CAM as an effective and less harmful alternative to conventional treatment.

CONCLUSIONS: Cancer patients may benefit from interventions (eg, patient education, improvements in physician-patient communication, and psychological therapy) to facilitate treatment decision making through increased understanding of conventional and CAM treatments and to identify barriers to treatment for individual patients.

KEY POINTS FOR CLINICIANS

Factors expressed by participants as influencing the decision to decline conventional cancer treatment included: beliefs about harm, possible death and side effects, and the belief in or discovery of CAM as an effective alternative.
Participants found CAM to be more effective and less harmful than conventional treatment.
Participants gave sources of evidence for effectiveness of CAM: personal, medical, anecdotal, and belief.
Participants reported positive or neutral interactions with health care providers regarding their use of CAM.
Participants reported negative interactions or possible missing communication with health care providers as being factors in their decision to decline 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.