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Defining the goals of a clinical team within a cancer program or oncology practice group, where the focus will be on maximizing QOL, may be difficult.
It is surely widely appreciated that the quality of life (QOL) experienced by patients with cancer is a critically relevant measure of the care provided. Further, in the therapeutic clinical trials domain, enhancing QOL and improving survival are frequently cited as primary end points or secondary end points that define a favorable outcome.
Yet, when one considers the establishment of a clinical team within an organized cancer program, or even a large oncology practice group, where the focus will be on maximizing QOL, it may be difficult to define the objective goals of this effort. In fact, even agreeing on the clinical membership of the initiative may be problematic.
Despite an internal understanding of a variety of potentially beneficial strategies to maintain and enhance the QOL of the cancer patient population, the reality of the current American health care payment model, which in most circumstances fails to recognize the effort required to provide these essential services, may realistically negatively affect the development of a fiscally viable program.
In addition, although some may choose to disagree, in the opinion of this commentator the terminologies and metrics designed to carefully and objectively demonstrate the favorable influence of interventions on survival are far easier to define, be agreed upon, measure, and ultimately be accepted by the cancer community and others (eg, regulators, payers) as being clinically meaningful than currently available outcomes employed to assess individual or group perceptions of the quality of care experienced during the cancer journey.
For example, even a high-level descriptive term such as “survivorship,” which is designed to foster hope, develop assisting programs, and generally support a positive approach to potentially difficult future events and feelings, has not been without controversy.1
Supportive care, or a frequently employed alternative name, palliative care, is terminology designed to emphasize necessary efforts to optimize outcomes involving multiple clinical and nonclinical domains that may substantially influence an individual patient’s QOL, especially in the setting of advanced cancers.2,3
Trial-based experiences have confirmed that a variety of novel approaches (eg, follow-up telephone calls after hospital discharge, easy-to-use online patient portals, etc) designed to quickly recognize and effectively manage signs of serious cancer or treatment-related adverse effects may favorably affect patient well-being, medically related costs (emergency department visits, unplanned hospitalizations), and even survival.4-6
Yet, if one inquires as to what services are required/essential to establish an effective supportive or palliative care team, what services might be considered optional, what is the optimal organizational and leadership structure of such an effort, and what should be the anticipated costs vs revenue of the program, responses and current experiences are almost certain to vary greatly.
Does supportive care include behavioral and nutrition services, social work, financial counselors, pastoral care, and discharge planners, all of which are surely relevant to many individual patients’ well-being? Does a “survivorship” program, however this effort is defined, belong within the organizational domain of supportive care, and if not, where should such an initiative be placed?
Conversely, although likely not a popular notion, when limited available resources are necessarily considered, might supportive care as a specific cancer program rationally be defined far more narrowly? Should it perhaps focus on pain management, effective transition to end-of-life care and use of hospice services, and strategies to optimize safe and efficient hospital discharge?7
The difficulty in providing clear answers to these questions is highlighted by the reported outcomes of trials at least partially designed to help define and further objectively document the utility of palliative/supportive in cancer management and patients with other serious but nonmalignant medical conditions.
For example, in a recently reported randomized study of palliative care provided in the perioperative setting involving 359 patients with gastrointestinal cancers undergoing an attempt at curative surgery, investigators were unable to demonstrate a difference in either survival or prospectively defined patient-reported health-related QOL measures.8 One might suggest an alternative interpretation of the study results was that the inclusion criteria were excessively broad, and perhaps a different result might have been obtained if participants were restricted to individuals at high risk of experiencing a poor outcome due to nutritional concerns or the presence of relevant comorbid conditions.
Investigators in another randomized study involving “seriously ill hospitalized patients” explored the utility of a default palliative care consult order and failed to demonstrate a reduction in the length of hospital stay, the primary study end point.9 Although perhaps a disappointing result, it is reasonable to inquire if the declared end point, while surely a rational fiscal goal, exceeded what could have possibly been expected for a palliative care consult intervention.
Conversely, a recently reported analysis of the ADAPT trial (NCT02713347), which explored a nurse/social worker effort within the Veterans Health Administration in individuals with serious lung and heart disease, demonstrated a statistically significant improvement in QOL compared with “usual care,”10 but although clinically meaningful, one can certainly appreciate this end point may not by itself result in such a program being granted high priority within an organization dealing with the reality of limited resources.
There has been no intent in writing this commentary to achieve closure on this complex topic. Rather, the goal has been to stimulate essential discussions to ensure that supportive/palliative care efforts achieve recognition as an essential core component of any cancer program, regardless of our current societal difficulties in defining exactly what that “core” entails and how it will be funded.