Delivering on the promise of patient-centered care.

Abstract

Despite our success in improving survival outcomes in patients with cancer, the words “you have cancer” are still terrifying. These 3 words immediately conjure up the threat of death and the physical and emotional suffering associated with cancer treatments. How well we communicate a cancer diagnosis to patients is at the heart of patientcentered care, but this is only the first of many elements in this process. Patientcentered care is a central tenet of a high-quality cancer care delivery system.1 To the extent that this is highly valued, we must carefully examine how well we are doing in providing this aspect of quality care. “Patient-centered care” has become a popular phrase, along with “personalized treatment” and “precision medicine.” Although most of us think we know what these phrases mean, perhaps taking a minute to examine the intent of each in the context of cancer care is worthwhile. Cancer is a complex and heterogeneous disease that may manifest itself in diverse ways in individual patients. A better understanding of the genetic signature of individual tumors and the characteristics of the host in which the disease resides are nearing possibility, and this highly specific information will (we hope!) allow refinements in the recommended treatments that patients will receive in the future. This may eliminate a one-size-fits-all approach to cancer treatment, and allow for therapeutic modifications that enhance efficacy and potentially reduce toxicity. This is very much the concept behind “personalized” and “precision” approaches to cancer therapeutics.2 In contrast, the concept of “patient-centered care” encompasses a broader swath of the cancer care delivery process in that before patients sign-on to a therapeutic approach for disease management, they must be well-informed about the diagnosis, prognosis, and potential treatment options, having received that information from clinicians with good communication skills that match the unique needs of the patient. In addition, the health care system must be well organized and be able to deliver the chosen care in a timely and compassionate manner, helping the patient avoid unnecessary emergency department visits and hospitalizations. And they must do all of this in a standard manner that ensures it is affordable and part of routine care. No matter how effective precision medicine is in identifying the best treatment for a patient, delivery of this treatment will still require the cooperation of the patient (and family). This requires a patient who is well-informed, can manage treatment side effects, and can follow through on whatever else is prescribed. That is what “patientcentered care” will make possible. Figure 1, taken from the recent Institute of Medicine (IOM) report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,1 shows the close relationship between the components of patient-centered care and improved communication and, ultimately, improved health outcomes. However, delivering this kind of care in our current health care system presents many challenges, largely because of the fragmentation of care (ie, members of the cancer care team not practicing in the same setting). This fragmentation often leads to barriers to effective communication between physicians and resultant gaps in what is communicated to the patient. Patients and their families are often held responsible for communicating recommendations from one physician to another, and this adds a great burden to their experience when they are trying to complete diagnostic tests and make decisions about a treatment plan. The IOM report details many of the challenges inherent in effective patient-centered communication and shared decision-making, focusing Patricia A. Ganz, MD