Purpose: Existing recommendations for communicating with patients with metastatic cancer about redefining goals of care when anticancer treatment is unlikely to provide benefit are based on limited evidence. This study was designed to elicit patient and family views on commonly used communication practices.
Study design and methods: Participants were 37 patients with metastatic gastrointestinal cancer and 20 bereaved family members who listened to audiorecordings of oncology fellows instructed to discuss a transition in goals of care with a standardized patient for whom evidence-based palliative chemotherapy was no longer effective. During semistructured qualitative interviews, participants commented on the audiorecordings to give feedback on what they liked or disliked about the oncologist's communication. These comments were transcribed and analyzed.
Results: Three preferred communication practices were identified from participants' comments. The first practice involves a necessary disruption of the patient's expectations about "trying another chemo" ("We're in a different place"). The second practice is offering actionable responses to the disruption ("Here's what we can do now"). The third practice is to find a new place that acknowledges death is closer yet still allows for "living forward" ("Use your inner wisdom").
Conclusion: This study of patient and family feedback indicates that patients and families perceive a conversation about goals of care to require disruption of an existing routine, followed by a process of searching and then reconfiguration, rather than a logical decision process. These findings suggest that assessing quality from patient perspectives must take into account a period of disruption and chaos.