Palliative care in cancer: enhancing our view with the science of emotion and decision making.

Abstract

Dear Editor: Substantive research has established the importance of incorporating early palliative care into oncology treatment. Accordingly, the American Society of Clinical Oncology recommends concurrent oncology treatment and palliative care.1 However, most cancer patients do not receive palliative care until the end of life, when it may be inadequate to alter quality of life.1 Many structural barriers to early palliative care have been explored, yet at the core of clinical practice, two decisions are central: (1) the provider must decide to recommend palliative care (or accept a patient request); and (2) the patient and family must decide to accept (or request) palliative care. The model of early and concurrent palliative care represents a heuristic shift in cancer care that is highly emotional for the patient, family, and provider. Thus, a critical question: How can the science of emotions and decision making improve our understanding of palliative care referral and acceptance and inform efforts to improve palliative care uptake? Emotions are often discounted in medical decision making, which emphasizes information provision and adherence to evidenced-based guidelines. However, research shows we are unable to fully conceptualize emotions (“hot” states) and their consequences when we are not experiencing those emotions (are in a “cold” state).2 This “hot-cold empathy gap” occurs both interpersonally (when others are emotional and we are not) and intrapersonally (when we are recalling or anticipating being emotional while currently feeling unemotional). The empathy gap has important implications for palliative care decision making. Patients and caregivers may be unable to anticipate future emotional responses to be experienced as cancer progresses when they are at the beginning of care. In addition, while both may experience emotions related to cancer burden and impending loss, these emotional experiences are not the same for the patient and caregiver, and this empathy gap could have important implications for decision making. Translating these findings into palliative care would allow us to think strategically about how to facilitate optimal decision making under emotional circumstances. Moreover, providers, while trained in communication, may still struggle to fully identify with a patient's emotional experiences. Thus the empathy gap may shed light on physician perceptions of initiating palliative care as depriving patients of hope.3 Future research in provider decision making could explore the role of emotion and empathy gaps in provider willingness to discuss topics such as early and concurrent palliative care, advanced care planning, or the shift from curative to palliative care. Research also demonstrates that emotions can be “contagious,” with implications for decision making.4 This begs important questions for palliative care: How do caregiver emotions influence the patient decision making process? How do caregiver emotional responses to patients and/or providers influence their choices for managing pain or stopping active treatment? Looking strictly at the evidence, referral to or request of palliative care in treatment of advanced or high-lethality cancer should be standard of care. Yet, we do not have a clear understanding of decision processes in this emotionally charged arena that prevent this recommendation from becoming practice. Incorporating insights from emotion and decision making can strengthen our research, leading to the design of more effective interventions and decision support systems.