Expanding the Circle for the Care of People with Cancer

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When George Thibault, MD, stepped down in mid-2018 from his decade at the helm of the Josiah Macy Jr. Foundation, he was lauded by many as the godfather of the renewal in the United States of that nation's always challenged movement toward interprofessionalism and team care. ¹ One key Macy investment stimulated the U.S. National Academy of Medicine to convene the Global Forum on Innovation in Health Professional Education. That initiative, now in its seventh year, engages leaders of academic and professional organizations from nearly two dozen distinct disciplines. These range from medicine, nursing, social work, and sports medicine to complementary and integrative health disciplines such as chiropractic, naturopathic medicine, acupuncture, and Oriental medicine and massage that are represented at the Global Forum by the Academic Collaborative for Integrative Health. In the wrap-up session of the first workshop, Thibault was expansive and excited by what had been discussed:

The issues of who's on the team and who's at the table have been important here. We don't want to create a new elitism, leave others out of the circle. We need to rethink who is in our circle, both in terms of clinical and community resources. We need to be more explicit in our competency to be able to go outside our teams. We need more partnerships and funding partnerships. ²

Thibault's insight into the multiple elements needed for dramatic change in healthcare marked a significant shift in the interprofessional dialogue. It was previously dominated by the historically troubled medical doctor–nurse dyad. When expanded, the next ring led to pharmacists and perhaps public health. The circle, Thibault commented, needed to be bigger. Behavioral health, social workers, and community health workers were in the mix. And so were the new kids on the block—the multiple complementary and integrative disciplines and practices.

Thibault's call has great resonance for anyone who has been an activist in their strategies for surviving or thriving in and, through, cancer treatment. These typically integrate teams of supportive care professionals with little or no assistance from the radiation oncologists, medical oncologists, surgeons, nurses, and administrators in the multimillion dollar oncology centers that support the powerful, and powerfully invasive methods that are the stock in their life-saving trade. Mostly, activist patients come to expect that when they pick their team members to provide care to complement the blunt forces of cancer treatment, they will be on their own. The two Mayo articles in this special issue underscore this limited, professional, and institutional engagement. ^3,4 They lean on the Internet and on friends to find their way to the complementary treatments and practitioners they hope might be of service.

This was my process 9 years ago when I underwent treatment for tonsillar cancer—though given my professional involvements, I was long on help from colleagues and short on need for the Internet. My concurrent radiation plus cisplatin program was characterized by one of my doctors as “next to bone marrow transplant, among the most brutal things we do.” Sharing what worked or did not and why we think so—and what is working now or does not because many adverse consequences are life-long—becomes a new pastime for those moving into the new normal of cancer survivorship.

The reasons for the oncology field to follow Thibault's call to expand the circle of care go beyond the reality that most people with cancer use complementary treatments ⁵ —compelling as it is on its own account. Oncologists have an ethical provocation to lift their eyes and practice to a new horizon. They justify their harsh and damaging means by the life-saving ends of their care. Still, one cannot fully duck away from primum non nocere: above all, do no harm. The collateral damage of the treatment and challenges for patients of transitioning to their new normal demands that the ethical clinician and ethical organization search high and low to engage the right people and practices. They have an ethical charge to build the right integrative teams to diminish the harm and aid the healing.

It is not easy for humans to choose, intellectually, to seek to develop new competencies—as Thibault suggests are demanded—before we can fully grasp what we will gain by looking beyond our familiar horizon. Think of the famous New Yorker cover in which an image of self-centered myopic view is comically captured. The “View from 9th Avenue” shows the world marching west across the island of Manhattan, avenue by avenue in great detail, and then to the Hudson River and New Jersey where any detail abruptly ends, with just distant blips of Chicago, Los Angeles, the Pacific Ocean, and China all in the far and seemingly meaningless distance. Emerging science and endorsed integrative oncology guidelines make it clear that it is time for oncology to gain new competencies and recognize the value beyond the river.

Through research pioneers in integrative oncology—many of whom are featured in this issue—and through the Society for Integrative Oncology (SIO), a patient-centered bridge beyond oncology's figurative Hudson River is laboriously being built. This special issue is part of this ongoing community engagement to expand oncology's circle of care. The clinical summaries were invited as abutments: academically sound and clinically relevant explorations of integrative therapies and practices to inspire future research and support development of new competencies in oncology care. Construction of new foundations is challenging, so we also invited commentaries. And the march forward must be bricked with new evidence, so we called for research articles. The goal was a product that would advance the evidence-informed integrative oncology model.

In the closing days of making selections among the outpouring of nearly 70 article submissions, a research-inspired story hit the mainstream media with a force that underscored just why this continued bridge building and circle expansion are needed. Picture yourself as an individual in the throes of fear amid a new cancer diagnosis. You pick up the New York Times and read this headline: “People who used herbs, acupuncture and other complementary treatments tended to die earlier than those who didn't.” The message, broadcast through many of the world's most powerful media channels, was quickly challenged by leading integrative oncologists as a major misclassification error. The differences in lifespan found were all due to patients delaying or refusing recommended care—thus choosing “alternatives” to treatment rather than “complementary” care that would be part of an integrative oncology strategy. ⁶ Yet, there it was for anyone considering their choices: research from a respected medical school, Yale, in a pre-eminent journal, JAMA Oncology, misleading patients who, quite likely, received little or no guidance on integrative practices from the narrow healthcare team at the institution where they are receiving their powerful and damaging cancer treatments.

This misclassification was symptom, not cause. Consider a group of male academics setting a curriculum in women's studies, or of white people deciding how to involve people of color. The cause is the failure of the authors and the journal editors to have Thibault on their shoulder, urging them to expand their circle of collaboration. They did not need to look far to expand their circle and bring in an expert who knew something about the field on which they were passing a sort of life and death judgment. The American Society for Clinical Oncology has endorsed breast cancer guidelines from the SIO. ⁷ The Journal of the National Cancer Institute partnered with SIO on an entire special issue. ⁸ At the time of the Yale study, the late integrative oncologist Ather Ali, ND, MPH, was head of an integrative oncology program at a Yale teaching center for cancer treatment.

The good news is that we are, despite this startling widely broadcast crisis in misclassification, in a cultural shift in oncology care. Recognition of integrative oncology and its value in supportive cancer care is growing, rapidly even in the context of medicine's famously slow uptake of new practices. Thomas Kuhn famously wrote in The Structure of Scientific Revolution that we see the most resistant behavior just before a paradigm shift occurs. ⁹ On behalf of all whose lives have been extended by the life-saving brutality to our tissues and spirits that is an expected part of cancer treatment—and thus who have a chance to benefit from integrative complementary care—this shift cannot come a moment too soon.