By Jennifer Jang, ASTRO Communications
Yesterday, Arif Kamal, MD, MBA, MHS, and Chief Patient Officer of the American Cancer Society (ACS), launched into a stirring talk: “Cancer Support 3.0: A New Era in Compassion.” Introduced by ASTRO President Jeff Michalski, MD, MBA, FASTRO, Dr. Kamal took the stage to a Taylor Swift tune, soon explaining “eras” of medical development, and delving into facets of a patient’s psychological well-being to achieve optimal health outcomes.
ACS has existed for 110 years, motivated by the unacceptably high burden of cancer. While treatments have improved, we understand inherently that there is “a large gap between availability of innovation and accessibility of innovation, and fundamentally, that gap is where injustice is rooted.”
Dr. Kamal reviewed the “eras” for cancer care: Era 1 covered medicine up to 1980, where the field recognized that a specific expertise was required for cancer care. Era 2 was one of personalizing treatment, from the 1980 to the 2000s, where diagnosis and treatment included looking for targets, incorporating proteomics and genomics. Which brings us to today, Era 3 of “professionalizing compassion” — deliberate actions of compassion, necessary to get patients to the right outcomes. However, stress is inherent to the job. And stress is compassion’s greatest threat.
To combat the threat, cancer care must be team-based care, where we can be intentional that people are more than their biology and look at multi-dimensional support that includes respecting culture, assessing social determinants of health, caregiver support and financial care.
Not everyone will experience cancer in the same way. Black men dying four times more than white men when matched stage for stage gives pause. Clinical trial participation rates are extraordinarily low. Cures will become a reality when more people are on trials.
Some cancers are evolving into a chronic disease. Patients once rallied for six months or 12 months, and now might rally for years or decades. Survival is progress, but many in the interim have used up their savings. Our support systems have not evolved to help them over time.
Furthermore, disparities are rampant in oncology including screening and clinical trials. Robert Winn, MD, ASTRO’s 2022 Honorary Member’s notion reinforces that beyond DNA, an individual’s “ZNA” (zip code) influences their cancer risks, with outcomes varying by zip code. Since disparities exist at the screening level, certainly they will be abundant at the outcomes level.
Low screening rates reflect the “lag of innovation” with disparities rooted in community, sociology, relationships, the way individuals live and work. Dr. Kamal encouraged clinicians to lean into social determinants of cancer outcomes to understand the breadth and depth of distress that might face a person.
ACS supports 32 Hope Lodges, housing located near treatment centers, along with the “road to recovery” program that provides drivers to take patients to treatments. Notably, a seismic shift in the Medicare Physician Fee Schedule was recently proposed — a reimbursement pathway for a cancer navigation workforce, that will help move the dial in the right direction.
Beyond physical health, Dr. Kamal brought up the phenomenon of “cancer ghosting.” A survey of 1,200 patients revealed that privileged patients will often experience a short-lived “cancer rally,” where the community provides support. However, more than 60% expressed a pervasive sense of emotional isolation, perhaps through inability to work. Whether the friend or clinician, we are not innately trained to know how to respond, leading to cancer ghosting, whether less texting, phone calls, etc. Ultimately, 17 million cancer survivors feel less connected than before diagnoses.
In chronic illnesses, social isolation and loneliness is a predictor of poor outcomes. Dr. Kamal encouraged the audience to ask patients about their worries and hopes. The emotion associated with a conversation is what people remember. “We judge ourselves by our intentions and others by their behaviors.” What era are we in currently? We are at this point of professionalizing compassion. It is our job to think about these things, to act on them when we see opportunity, to sympathize for someone else who’s going through a misfortune that could happen to all of us.
A patient is a complex amalgam of puzzle pieces: environment, culture, their spirit — all contributing to their full person. Being human with another human is what makes the work we do so valuable. Specializing and professionalizing compassion will be the way of the future.
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