Looking Back, Looking Forward: The Ethical Framing of Complementary and Alternative Medicine in Oncology Over the Last 20 Years

Abstract

This commentary takes a look back at views on complementary and alternative medicine and reflects on how those views have evolved, advocating for a conversation around complementary and alternative medicine in cancer care that is more nuanced, patient‐centered, and respectful to best meet the needs of patients in the coming decades.

2017 marked the 20th anniversary of the statement adopted by the American Society of Clinical Oncology (ASCO) titled “The Physician and Unorthodox Cancer Therapies,” which outlined the physician's role in navigating “unorthodox or questionable methods of care” with oncology patients [1]. The ASCO statement signaled a watershed moment in which oncology began to address complementary and alternative medicine (CAM). Although many traditional practices for healing encompassed by CAM are very old, our engagement with them in modern Western medicine is relatively new. That newness, along with major studies disproving some specific and publicly hyped CAM modalities for cancer treatment, prompted this early commentary from oncology leaders about CAM [2], [3].

A lot has happened in the science and language surrounding CAM in the last two decades. A look back at the original ASCO statement reflects the tone and mentality of the era in which it was written, providing an opportunity to consider where we have been and where we are going. Here, we reflect on that statement and trace how the language around CAM therapies in oncology has evolved since. Although medicine's approach to CAM has progressed significantly over the past two decades, we argue that the conversation around CAM in cancer care can become yet more nuanced, patient centered, and respectful in order to better meet the needs of patients in the coming decades.

Context of CAM in Cancer Care in the 1990s

The 1990s brought broad awareness in medicine about patient practices of CAM [4], [5], [6]. The ASCO statement reflected a safety‐oriented skepticism toward CAM during an era in which strong public enthusiasm for CAM had little corresponding scientific evidence. Many oncologists still remembered cases of patients forgoing chemotherapy for Laetrile, a much‐touted but toxic compound patented in the 1960s and tested over the next 20 years with no evidence of benefit against cancer [7]. Simultaneously at the NIH, institutional efforts were stirring to shift the conversation scientifically with the goal of understanding both benefits and harms of CAM therapies from a biomedical perspective. Despite criticism, national investments in centers and offices through the NIH and National Cancer Institute increased research dollars, and public pressure resulted in studies using scientific methodology to investigate CAM modalities [8], [9], [10], [11].

Ethical Framing of CAM in “The Physician and Unorthodox Cancer Therapies”: A Snapshot of Professional Thought in the 1990s

“The Physician and Unorthodox Cancer Therapies” attempted to reconcile what oncologists perceived as the major risks of CAM with the desire of patients with cancer to be viewed in “physical and spiritual totality” [1]. Like a protective parent, the tone of the statement was decidedly precautionary. It focused on the “reliability” of information, thus casting CAM as inherently unreliable. It instructed oncologists to discuss “unproven ‘alternative treatments’” in order to “preempt later confrontation with an absolutely committed patient” [1]. In addition to paternalistic overtones, it seemed to conflate “unproven” and “disproven,” thus shutting the door to even the possibility of future investigation that might prove a therapy's benefit. Although understandable for its time, given lingering paternalism and historical context, the ethical framing reads to contemporary ears as unduly focused on nonmaleficence, without the same consideration paid to autonomy and respect. In hindsight, that language might have acknowledged that CAM—a broad umbrella term for a diverse assortment of therapies—could complement conventional medicine if adequately studied.

A patient's desires to be proactive in his or her health and to be treated as a whole person, although acknowledged in the 1997 statement, were quickly dismissed. Missing from the discourse was a fundamental acknowledgment of alternate worldviews about healing [12]. These worldviews, stemming from geography or locality, culture, and spirituality, influence our own and our patients’ values and decisions about health care and are worth acknowledging and understanding. Terms in the statement such as “unsubstantiated claims” and “questionable methods of care” placed healing practices outside of conventional oncology as other, inaccurately implying that if patients want care, they must conform to one particular worldview: the biomedical one. Although most oncologists would not stop conventional treatment if CAM were used, framing CAM in this way potentiates a common misinterpretation that in cancer care it's “the oncologist's way or the highway,” thus closing the door to discussion topics and psychosocial concerns that might not fit neatly into typical oncologic care. Furthermore, this implication creates binary opposition between perspectives on healing—scientific versus unscientific, modern versus traditional, and rational versus irrational. Arguably, patient‐centered care requires clinicians to at least acknowledge and furthermore, be willing to accommodate lay forms of wisdom within some bounds of safety [13]. By emphasizing lack of scientific evidence and creating cautionary alarm, the statement missed a crucial dimension of whole person care—remaining open to CAM approaches to healing as a matter of respect, even if the data are inconclusive [14].

Looking Back: Changes in Language, Values, and Understanding

The discourse around CAM in oncology has evolved since that statement was written. As part of the shift away from medical paternalism and toward more patient‐centered models of participatory medicine, patients began playing an increasingly active role in shaping the environment of medicine [15], [16], [17]. Furthermore, as cancer survivorship has become a reality for more and more people, these survivors identify needs beyond mere life extension—needs related to thriving with and after cancer [18], [19], [20], [21], [22]. Many cancer survivors use CAM therapies to address unmet needs after cancer treatment, and indeed, CAM modalities may be useful for common symptoms both during and after treatment [23], [24], [25], [26], [27], [28], [29]. As we start recognizing the holistic needs of patients, and as patients become more empowered to voice their needs and values, conversations about CAM become increasingly relevant as a quality‐of‐life topic.

Oncology literature has shifted away from distinct paternalism when it comes to CAM and into a more contemporary benign tolerance of CAM as unavoidable risk behavior. A 2001 article in the Journal of Clinical Oncology argued that academic oncology has no choice but to confront CAM [30]. Yet the tone remained precautionary. Recent commentary has advocated for oncologists to broach the subject of CAM with patients primarily as a means for enhancing disclosure of those therapies so that doctors can address risk [31]. CAM modalities can pose risks, and ethical analysis of their role cannot avoid considering nonmaleficence. However, we must also acknowledge our own biases in this harm‐avoidant framing. There is a tendency to apply strict scrutiny to CAM in terms of dollars spent, time expended, and possible side effects experienced that are not as rigorously and frequently applied to medical cancer therapy, itself costly and time consuming and often laden with severe and potentially irreversible side effects. This tendency exposes a natural human inclination: doctors scrutinize more what they do not know [32], [33]. This seeming double standard is difficult but important to own in how we address CAM. Furthermore, talking about CAM simply for disclosure and consistently couching CAM as a risk behavior threaten to alienate patients. By not acknowledging the biases of the biomedical worldview, we create a barrier to better understanding our patients’ perspectives.

The current state of how CAM conversations fit in conventional oncology is informed by research. Those conversations are scant. In a large NIH‐funded observational study, we found that although CAM is discussed in a relative minority of medical oncology visits (11%), and the discussions were brief (<4 minutes total in a visit), those discussions were also characterized by greater patient engagement in dialogue and less physician verbal dominance [34]. Furthermore, conversations that include CAM are rated as better by both patient and clinician. We also found that in those conversations, more psychosocial topics get discussed on the whole. We suspect that the essence of benefit in discussing CAM was less about the content of those conversations and more about the way clinicians remained open to discussing life outside of the biomedical realm.

Looking Forward: Where Do We Go From Here?

Language around CAM in oncology deserves further reframing. The historical evolution from paternalistic caution to contemporary benign tolerance should now take a further step toward a fundamentally respect‐based, person‐centered approach. Medicine need not fully integrate alternative practices in order to be patient‐centered, nor must doctors know everything about every CAM modality patients would like to discuss. Rather, we advocate for meeting people where they are, understanding what they identify as critical elements of healing, and navigating that interpersonal relationship with curiosity and openness. These conversations can be hard. If physicians do not think they are equipped to discuss CAM with patients, perhaps the most ethical approach is to refer patients to colleagues with the experience to have that conversation.

We posit that clinicians ought to talk about CAM with their patients, but not for mere disclosure or solely to do no harm. Rather, if we discuss with patients what is important to them and are open to the answers they give us in an effort to come to know them as people embedded in a particular social, cultural, and historical context, we will have a better ability to connect and discover their values. This understanding can help us offer more person‐centered care. It is plausible that physician receptivity to patient use of CAM could have a positive effect on the therapeutic alliance. If so, it is possible that being open to CAM could have numerous positive therapeutic benefits associated with that alliance, including making patients more willing to fully participate in treatment, thus improving the efficacy of those treatments and making patients’ experiences of cancer more tolerable [35], [36].

A person‐centered approach to CAM in contemporary oncology would incorporate both self‐awareness and acknowledgment of the diversity of worldviews held by patients who might experience healing differently. It would employ nonjudgment, involve physicians talking less and patients talking more, and focus on partnership with patients throughout their cancer journey, even when their perspectives and choices differ from our own. Protecting patients and expressing medical viewpoints or concerns about CAM treatments may be indicated, but this should be predicated on first understanding and respecting the cultural, spiritual, and personal positioning of the patient. Patients need guidance, but they also need a doctor who understands and respects them. We can do both. If we shift our framing of CAM from one that is directly oppositional or solely focused on risk behavior to a more nuanced, respect‐based approach that seeks understanding through probing questions, self‐awareness, and basic understanding of diverse worldviews, we can help each person navigate his or her cancer journey in a way that is not only safe and effective but authentic, whole, and healing.

Disclosures

Barbara Koenig: Illumina Corporation (other—travel). The other authors indicated no financial relationships.

(C/A) Consulting/advisory relationship; (RF) Research funding; (E) Employment; (ET) Expert testimony; (H) Honoraria received; (OI) Ownership interests; (IP) Intellectual property rights/inventor/patent holder; (SAB) Scientific advisory board