In this article we focus on communication with patients who have already experienced a cancer diagnosis, i.e., tertiary and quaternary cancer prevention communication. The aims of tertiary prevention are to reduce morbidity and mortality among patients who have already been diagnosed with cancer. Quaternary prevention, similar to palliative care, aims to alleviate suffering and optimize end-of-life care. Compared to primary prevention (reducing the chance cancer will occur) and secondary prevention (screening for early-stage disease), individuals who might benefit from tertiary and quaternary prevention strategies share a context – an intimate interaction with the healthcare system about their cancer care. As with other aspects of cancer care, cancer communication strives for high quality, such as the six quality aims proposed by the Institute of Medicine (effective, safe, timely, efficient, equitable, and patient-centered) (Institute of Medicine (IOM), 2001
). Communication strategies relevant for this context and these goals, then, are a focus of this review.
Generically, a system is “a group of interacting, interrelated, or interdependent elements forming a complex whole” (Houghton Mifflin Company, 2006
). In healthcare, systems involve actors and tools at all levels – the macro level (e.g., third party payers, electronic medical records), interpersonal dynamics (power structure, decision-making role preference), and individual personality differences and unique circumstances. They encompass all of the multi-leveled people, places, tools, organizational structures, and circumstances associated with the care of a patient, as well as the connections between them.
presents these various components of the healthcare system. Ultimately, these system components make up the context for communication between patients and health care providers (or their technological mediators such as websites, brochures, or kiosks). Out of this complex context emerges some kind of connection (or not) involving a cancer patient. If successful communication occurs, a therapeutic alliance is established leading to some outcome of importance. For tertiary and quaternary cancer care, these outcomes could include informed decision making about clinical trial enrollment, treatment adherence, or a “good” death with minimal suffering.
A model for system communication in the health care system.
For a long time, the intra- and inter-personal dynamics of cancer patient communication have been research foci. They should continue to be. However, systems-based approaches must integrate these aspects into the bigger picture of healthcare – often depicted at the macro level, from an ecological perspective. For systems to exist and function, communication must be established and maintained among actors within and between (i.e., at the intersection) each of these ecological levels (Viswanath, 2006
). There remain important challenges, some broadly applicable and some unique to healthcare in the United States, particularly for macro-level aspects of the healthcare system that could impede effective cancer communication.
The greatly decentralized, fragmented nature of healthcare presents significant challenges to health communication for cancer patients. Cancer patients receive care from multiple specialists (radiation oncologists, medical oncologists, genetic counselors, social workers, surgical oncologists, etc.). The coordination of care among the specialists is often fragmented and seldom team-oriented, leading to communication gaps among them as well as patients. Moreover, most patients are not seen in comprehensive cancer centers with multidisciplinary teams. So, communication between these specialists and the patient's primary care physician is a significant concern with potential for breakdown (Aiello Bowles et al., 2008
). This breakdown in communication can happen at multiple points and for many reasons. Patients might not know the names of all of their specialists or understand their healthcare roles. Medical records, radiology films, and other important patient data may not be sufficiently or efficiently transferred from one specialist to the other. At a more distant level, insufficient communication with public health databases, such as cancer registries, ultimately affects communication with patients when the public health knowledge generated from those data fails to be translated to individual patient care initiatives.
Financial systems also potentially impact cancer care, likely mediated through communication with patients. For example, insurance status may predict which cancer specialists interact with patients, what treatments patients receive, and how adherent patients are with follow-up (Bradley, Neumark, Shickle, & Farrell, 2008
; Bradley, Given, Dahman, & Fitzgerald, 2008
). It is unexplored, but plausible, that patient-provider communication mediates, or partially mediates, this process. Related, reimbursement systems that reward according to procedures rather than patient outcomes may be less likely to support cancer control outcomes and quality care (Aiello Bowles et al., 2008
). Such frameworks may in fact contribute to higher costs [e.g., unnecessary chemotherapy at the end-of-life (Payne, Coyne, & Smith, 2002
)]. Insurance deductibles, co-pays, levels of reimbursement, or lack of any insurance constitute the financial macro system, which likely influences both patient and provider decision making during cancer treatment discussions.
In addition to information from other providers and third-party payers, various policies and guidelines can broadly and differentially affect cancer communication. Cancer treatment guidance comes from many sources with varying authority and enforcement. Related to the above discussion of financial systems, insurance company reimbursement criteria may strongly influence the range of cancer treatment options discussed with patients. Guidelines from various professional organizations (e.g., National Comprehensive Cancer Network) may offer a multidisciplinary perspective, but often patient-provider discussions remain “provider-centric” (Aiello Bowles et al., 2008
), reflecting the fragmentation of specialty cancer care and, again, the financial reward system.
The physical environment in which cancer communication takes place is also important. Did a patient have to drive two hours to find a radiation oncology facility? If so, that could influence the discussion of treatment choices. A recent large epidemiologic study, for example, found that breast cancer patients seen in urban centers were more likely to receive adjuvant radiation therapy (Hershman et al., 2008
). Other physical variables are likely to impact cancer communication, but may have been less studied. Did the discussion take place in an exam room or a more comfortable consultation room? Did the patient have to fight traffic or walk a long distance from the parking garage, delaying arrival and shortening the amount of time for discussion? Did the clinic or hospital hours mean a patient had to take time from an hourly-paid job, adding stress to the communication encounter? Was the call center staff that scheduled the patient for an appointment personable and welcoming, setting a tone for open patient discussion at her visit? Each of these organizational variables – broadly applicable across a variety of patients and providers – likely impacts cancer control outcomes, mediated by patient-provider communication.