Let’s Talk About Those Herbs You Are Taking: Ethical Considerations for Communication With Patients With Cancer About Complementary and Alternative Medicine

Abstract

Oncologists face ethical challenges when patients use potentially harmful complementary and alternative medicine in addition to or instead of conventional treatments for their cancer. For example, a patient may forego effective cancer treatment in favor of alternative therapies and suffer significant harm as a result. Similarly, false beliefs about the efficacy of complementary therapies may complicate the process of shared decision making about cancer treatment. In this vignette, we discuss clinicians’ obligations and provide recommendations for ethically sound communication practices in this clinical context.

VIGNETTE

L.R., a 65-year-old man, presents with recurrent colon cancer metastatic to liver and lung. L.R. was previously diagnosed with stage II sigmoid colon cancer, underwent resection, and postdischarge was monitored with surveillance alone. Three years later, L.R. has not attended surveillance appointments and returns to his primary care physician with complaints of fatigue and cough. The physician identifies the aforementioned tumors now seen in the liver and the lung, which prove to be a poorly differentiated widely metastatic carcinoma by biopsy, consistent with his primary colon cancer. L.R.’s doctor informs him that although his disease is treatable, he will die of cancer.

L.R. refuses potentially life-lengthening palliative chemotherapy recommended by his oncologist and, instead, expresses interest in an alternative herbal remedy he found online.¹ His oncologist strongly advises against this alternative remedy but agrees to continue seeing him to chart his disease progression. L.R. cancels medical appointments as his cancer progresses. Again, L.R’s oncologist stresses the importance of starting chemotherapy and discloses potential risks associated with herbs. L.R. chooses to continue with herbs and aims to double the dosage, despite the recommendation of his oncologist. Months later, L.R. is depressed and wheelchair-bound and returns to the oncologist willing to initiate chemotherapy.

The oncologist notes L.R.’s significant decline and worries chemotherapy will have potentially life-threatening toxicity. After initiating a detailed informed consent discussion describing treatment risks at this stage, she starts L.R. on a reduced-dose chemotherapy regimen. While receiving chemotherapy, L.R. reports increased appetite yet continues to lose weight. His tumor burden decreases, and after eight cycles, L.R. is ambulatory and reporting increased energy. Eighteen months later, L.R. continues chemotherapy with a substantial disease response. L.R. now actively advocates for the clinic and chemotherapy within his community.

DISCUSSION

Complementary and alternative medicine (CAM) is an umbrella term for therapies used in conjunction with conventional Western medicine (complementary) and those intended to replace conventional treatments (alternative), such as the herbs L.R. used in the vignette.

The National Center for Complementary and Integrative Health, a center of the National Institutes of Health, defines complementary health approaches as “practices and products of non-mainstream origin” and integrative health as “incorporating complementary approaches into mainstream health care.”^2(p2) There are two major types of CAM: natural products (eg, herbs, vitamins, probiotics) and mind and body practices (eg, yoga, acupuncture, meditation). Additional practices, including traditional Chinese medicine and naturopathy, are less easily categorized but are also considered CAM.² Evidence reveals that 49% to 83% of Americans with cancer will use or consider using CAM, including in the context of participation in early-phase clinical trials, at some point during their cancer trajectory.^3-5 A recent study demonstrated that alternative medicine use for curable cancers is associated with overall poorer survival.⁶ In a practice environment where most patients will use or consider CAM that may pose potential harms to health and wellness, talking to patients about CAM becomes ethically advisable.

CONSIDERATIONS IN SHARED DECISION MAKING

Oncologists increasingly operate within a model of shared decision making, a form of patient-centered care that incorporates patient values and experiences into treatment plans.⁷ The principles of beneficence, nonmaleficence, justice, and patient autonomy complicate CAM and shared decision making in cancer care, especially when CAM approaches conflict with the physician’s duty to prevent harm.⁸ Many questions arise when patients use CAM contrary to their physician’s recommendations. Here, we address the oncologist’s obligations to a patient who desires to use CAM in the context of the therapeutic relationship when it is medically contraindicated.

Shared decision making requires active involvement of the patient and clinician in all treatment decisions. The primary objectives of shared decision making include informing the patient of available treatment options, including risks and benefits, and integrating patient preferences and values into treatment plans.⁹ This model provides a forum for clinicians to elicit patients’ values, including about CAM, early in the patient-clinician relationship. If benefits are uncertain, clinicians have an ethical obligation to warn against potential adverse effects of any disclosed CAM. It is important that clinicians remain aware of any specific CAM modalities that the patient is considering or using to facilitate useful discussion.¹⁰ Clinicians should remain open to discussing CAM throughout the cancer care continuum to improve trust and maintain patient autonomy, as L.R.’s oncologist did.

Certain patient populations warrant special consideration in shared decision making around CAM, including pediatric patients and their families or any adult patients who are at a cognitive disadvantage. Here, clinicians need to take extra steps to evaluate the patient’s decisional capacity to determine the extent to which they can participate in their own treatment plan.¹¹ In pediatrics, clinicians adopt a safety first position on CAM to adhere to the principles of beneficence and nonmaleficence while respecting autonomy. Age-specific decision aids may provide optimal integration of shared decision-making frameworks into pediatrics.⁹ For adult patients, individual preference weighs heavily in shared decision making and should be considered during CAM discussions.

CLINICIAN OBLIGATIONS

We suggest that the practicing oncologist has three obligations: to communicate about CAM and elicit the patient’s values and plans, to educate patients about the potential impact of CAM modalities on oncology treatment, and to provide straightforward guidance about what the oncologist can commit to doing with or for the patient who opts to pursue CAM treatments.

Lack of common ground between patients and clinicians about CAM use may strain the clinician-patient relationship and has the potential to result in an adversarial posture. Patients maintain the right to accept or reject CAM as treatment of cancer, although the oncologist is not bound to maintain a relationship with any specific patient. The American Medical Association Code of Medical Ethics states that clinicians are free to choose to whom they provide treatments and are not obligated to provide care they believe to be futile.¹² The American College of Physicians posits that clinicians are duty-bound to gain understanding of a patient’s values but not required to violate fundamental personal values or medical standards in provision of patient care.¹³ If a clinician wishes to discontinue care of a patient, the fiduciary responsibility obligates physicians to support continuity of care, not abandon their patients, and facilitate transfer of care. Abandonment is unethical and may be grounds for legal action.¹⁴ To promote continuity and avoid abandonment, clinicians who withdraw from care must notify the patient in advance, so the patient may seek alternative care and/or transfer his/her care.¹⁵

Although ASCO does not have an explicit policy regarding clinician obligations to patients, it lists impact—mainly on patient care and well-being—as one of its three core values.¹⁶ ASCO has also published consensus guidelines highlighting the importance of patient-clinician communication across the cancer care continuum.¹⁷

Patients could be exposed to greater harm if, in the absence of meaningful dialogue with their oncologists, they use CAM therapies without their oncologist’s knowledge. Oncologists may be at risk for violating the duty of nonmaleficence if they fail to explore patient use of CAM that could impact the oncologist’s recommended treatment, including high-dose vitamins, botanicals, or other supplements (potentially toxic or reducing chemotherapy efficacy).¹⁸ Patients desire the oncologist’s guidance in an informed, interactive discussion on the nature of CAM to improve overall understanding and decision making.^19-27 Subsequently, patients report experiencing reduced stress/uncertainty, increased trust, and greater satisfaction.²⁸ Patients whose clinicians refuse to discuss CAM or who leave the discussion unsatisfied may seek CAM information from less-accurate sources, including the Internet, family/friends, CAM practitioners who are not versed in oncology care, and the CAM industry.

Oncologists may best support patient autonomy by providing a foundation of information on CAM to aid patient decision making.²⁹ Although oncologists are not ethically obligated to agree with scientifically unproven or ineffective care, it is important for oncologists to cautiously communicate contrary opinions regarding CAM use to effectively convey potential benefits and/or risks during or in place of conventional treatment.²⁹ The oncologist should clarify with the patient what care he/she will continue to provide if the patient elects to use CAM: for example, can the oncologist continue to monitor the patient? Can the clinician use imaging or other tests to provide insight about disease status even if standard treatments are not being used? Will the oncologist be available for questions about what to expect from the disease? Will the oncologist support enrollment in a clinical trial? Will the oncologist transfer care if uncomfortable with the patient’s choice regarding CAM? In the case vignette, L.R.’s oncologist agrees to future appointments to monitor disease progression.

MORAL DISTRESS OF ONCOLOGISTS IN THE CONTEXT OF USE OF CAM BY PATIENTS WITH CANCER

Oncologists may find the presence of CAM in patients’ treatment trajectories morally challenging, especially if patients use potentially dangerous CAM modalities or compromise the oncologist’s recommended treatment. Over time, oncologists may experience a heightened sense of discomfort and angst around their role in such decisions, a state of psychological tension known as moral distress.³⁰

In the context of CAM, oncologists may experience moral distress around how to appropriately engage with patients who consider and decide to use potentially harmful CAM despite the clinician’s advocacy against it.^31-41 It is possible—if not likely—that L.R.’s decision to proceed with CAM rather than palliative chemotherapy resulted in some degree of moral distress for his oncologist.

Effective communication regarding CAM is essential for establishing and maintaining a strong physician-patient relationship.¹⁵ Yet, many oncologists do not receive specialized communication skills training required to address complex cancer-specific issues during medical training or through clinical experiences, further intensifying communication challenges. Clinicians may struggle to understand why patients seek out potentially toxic, ineffective treatment approaches for cancer, yet, for many patients, it is an attempt to actively manage uncertainty; provide hope; incorporate the beliefs and healing practices of their families, social networks, and racial/ethnic communities; and address difficult emotions associated with a cancer diagnosis.^43-45 Keeping the line of communication open, as in L.R.’s case, built trust that eventually led the patient to accept and benefit from life-lengthening chemotherapy. Here, ongoing care facilitated a return to evidence-based care for the patient.^{19,20,26-29,46-51}

CAM COMMUNICATION APPROACHES

Several brief, empirically validated communication strategies would help oncologists address the challenges surrounding patient understanding of CAM (Table 1).^{19,20,26-29,46-51} CAM discussions must be initiated by the oncologist, who serves as a guide and resource for the patient with cancer. The oncologist should explore CAM use as a routine inquiry early in the clinical relationship, just as clinicians should always assess understanding of prognosis. Oncologists who inquire about CAM promote patient disclosure regarding CAM use. In some cases, such as that of L.R., patients may initiate the CAM discussion, yet clinicians should not expect unsolicited disclosure and rather should initiate discussions themselves. The opportunity for discussion of potential CAM risks and benefits should be a standard element of the shared decision-making process for the patient’s treatment plan. CAM use should be routinely revisited during the treatment course, including survivorship, to anticipate potential treatment interactions/toxicities. Patients are more likely to discuss CAM if the physician initiates the discussion, which is significant if patients are actively using or considering use of botanicals or high-dose vitamins before treatment initiation or in conjunction with conventional treatment. Below are detailed yet brief communication strategies oncologists may use to discuss CAM.^{19,20,26-29,46-51} Table 1 provides frameworks you may consider.

TABLE 1.

CAM Communication in Oncology

• Ask-tell-ask: This skill provides a foundation for the encounter and establishes rapport. Ask your patient about potential interest in and/or current CAM use at initial evaluation. Revisit CAM use with your patient throughout the treatment course and reassess during transitions.

• If the patient is using CAM, ask about details regarding the product (eg, duration of use, frequency, patient awareness of scientific efficacy).

• Tell your patient how oncologists are bound by scientific evidence, and decisions regarding effective treatment are based on science, data, and clinical trials. Provide education on the science in oncology and explain how oncologists use clinical trials to gather data on treatment efficacy.

• Ask your patient about current understanding of the CAM they are using or considering. Assess patient understanding of the nature of CAM and provide clarification. Ask about their emotions as patients and how they are coping with their status and the given information. Express empathy.

Advise, Collaborate, Negotiate

This skill fosters interactive discussion about CAM.

• Advise and discourage any CAM that provides significant harm and risk. Be honest, respectful, and supportive even if your patient was not truthful or rejects your expert opinion. Advise and encourage any CAM found to be scientifically beneficial (eg, counseling).

• Collaborate with your patient presently and in the future. Be respectful despite conflict and invite future CAM discussions.

• Negotiate: If your patient remains resistant despite education, invite the patient to return for a future visit; patients need time to process information or access additional resources to make an informed decision regarding CAM. Recognize that rejection is not about your authority as a clinician; it is about the patient’s need to do and consider every option available to them, including options that the clinician believes are unproven or even harmful.

Summarize

Summarize the visit details and your discussion with the patient. It is important to check and assess your patient’s understanding of a CAM discussion and if a final decision has been made. Offer additional CAM information from reliable sources (eg, certified CAM practitioner or National Center for Complementary and Integrative Health/National Institutes of Health).

CONCLUSION: WHAT SHOULD I DO?

When caring for a patient who is considering CAM in conjunction with or instead of conventional treatment, the oncology clinician’s primary responsibility is to the patient, but this duty is neither absolute nor unbounded. Shared decision making, an integral framework of modern oncology practice, supports thoughtful consideration of both patients’ and clinicians’ perspectives in formulation of treatment plans. For some patients, it may be reasonable for CAM to be incorporated in a treatment plan. However, oncologists supporting patient preferences regarding CAM without informed discussion jeopardize patient understanding of the potential risks and benefits of CAM. This lack of communication could contribute to patient harm and moral distress of the clinician. Alternatively, providing patient education regarding the risks/benefits of CAM sustains the clinician-patient relationship, while promoting patient autonomy, enhancing understanding, and alleviating oncologist moral distress.^30,40,41 Clinicians should discuss with patients the nature of CAM, fostering an open dialogue where hopes, concerns, and expectations are shared. This open communication should be initiated early in the cancer care continuum to maximally facilitate understanding through ongoing dialogue. Communication-centered approaches provide a resolution for potential conflicts between oncologists’ beliefs and professional integrity and patients’ decisions.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Administrative support: Molly M. McGinnis, Rebecca A. Spence

Provision of study material or patients: Laura Tenner, Molly M. McGinnis

Collection and assembly of data: Fay J. Hlubocky, Jonathan M. Marron, Molly M. McGinnis

Data analysis and interpretation: Laura Tenner, Fay J. Hlubocky, Jonathan M. Marron, Molly M. McGinnis

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Let’s Talk About Those Herbs You Are Taking: Ethical Considerations for Communication With Patients With Cancer About Complementary and Alternative Medicine

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

Laura Tenner

Consulting or Advisory Role: New B Innovation, Bayer, Community First Health Plans

Research Funding: EMD Serono Research and Development Institute

Travel, Accommodations, Expenses: New B Innovation, Bayer, Novartis

Charles D. Blanke

Consulting or Advisory Role: Comsort

Thomas W. LeBlanc

Honoraria: Celgene, Helsinn Therapeutics, Quintiles

Consulting or Advisory Role: Flatiron Health, Helsinn Therapeutics, Otsuka Pharmaceutical, Heron Therapeutics, Amgen, Seattle Genetics, Pfizer, Metronic

Research Funding: Seattle Genetics (Inst), AstraZeneca (Inst)

Travel, Accommodations, Expenses: Celgene, Otsuka Pharmaceutical, Heron Therapeutics, Amgen

Lynne P. Taylor

Research Funding: NeoOnc Technologies, Immunocellular Therapeutics, Arbor Pharmaceuticals

No other potential conflicts of interest were reported.