How Did Advanced Pancreatic Cancer Patients and Caregivers Communicate Their Needs?: A Pilot Study

Background. Although it is one of the leading causes of cancer deaths in the United States, little is known about how patients with advanced pancreatic cancer and their caregivers communicate their needs with healthcare providers. Advanced pancreatic cancer patients, caregivers and healthcare providers face unique communication challenges related to handling high psychological distress and overwhelming information within a short period of time. Consequently, these communication difficulties may also affect their quality of life and decision making process. This pilot study seeks to explore how advanced pancreatic cancer patients and their caregivers communicate their concerns about the disease, patterns of communication, and psychological reactions with oncologists.

Method. De-identified transcripts of advanced (stage III or IV) pancreatic cancer patients’ audio-recorded office visits were selected from a large randomized controlled trial called the Values and Options in Cancer Care (VOICE). The purpose of VOICE was to test an intervention designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. The VOICE recruited patients with stage three or four solid cancer from multiple sites in the New York and California regions. While participants of VOICE were required to provide one audio-recorded office visit with their oncologist before and after the intervention, we used only before intervention transcripts for this pilot study analysis. From a pool of 37 available transcripts, we purposeful selected four transcripts with different levels of prognosis discussion. Selected transcripts were analyzed in terms of discussion topics, message quality, patients’ emotional cues, and oncologists’ responses to these emotional cues. Message quality was evaluated based on several patient-centered clinician verbal behaviors purposed by Drs. Epstein and Street in a 2007 National Cancer Institute monograph. We coded patients’ emotional cues and oncologists’ corresponding responses based on the modified Medical Interview Aural Rating Scale (MIARS). Specifically, patients’ and caregivers’ emotional cues were coded based on four levels of psychological depth. Oncologists’ responses to emotional cues were coded into four main categories of cue-responding behaviors (exploration, acknowledgement, factual clarification, and block).

Results. The four transcripts represented 12 individuals because each contained three participants: oncologist, patient, and caregiver. The average word count was 3518.5 words. Oncologists, patients and caregivers contributed to 2806.3, 731 and 463.5 words, respectively. Among the nine categories of consultation topics identified, physical symptoms and signs were the most frequent (n=22) followed by care procedure (n=5), drugs (n=4) and lab results (n=4). Oncologists initiated more topics (n=35) than patients (n=8) and caregivers (n=4). Moreover, oncologist-initiated interruptions occurred in all consultations with an average of 5.3 interruptions per consultation. Although neither patient nor oncologist discussed emotion-related topics explicitly, patients and caregivers experienced a variety of emotional fluctuations. Overall, 87 patients’ (n=54) and caregivers’ (n=33) emotional cues were identified. The majority of the cues were level one, implicit emotional cues (n=80). The most frequent oncologists’ responding strategy was blocking, including switching focus (i.e., the oncologist switched away from the emotion, but within the context of the patients disclosure) or overt blocking (i.e., the oncologist disrupted the conversation by moving away from the content and cues).

Conclusion. To our knowledge, this is the first study to analyze unstructured conversation to identify advanced pancreatic cancer patients’ concerns and how these concerns were addressed in office visits. Our findings provide valuable insight for identifying needs and enhancing end of life care and communication of this population.