Navigating Prognostic Dialogue During Serious Illness Conversations

Double awareness, the ability to live meaningfully while preparing for the end of life, is central to serious illness conversations. In hematology, prognostic uncertainty and expectations of novel therapies often delay prognostic dialogue, limiting opportunities to cultivate double awareness in patients and caregivers.

To explore how patients, caregivers, and hematology clinicians trained in serious illness conversations navigate prognostic dialogue and how this may facilitate double awareness.

This qualitative study analyzed audio-recorded transcripts of serious illness conversations conducted between November 1, 2022, and January 31, 2025, among patients, caregivers, and clinicians treating hematologic malignant neoplasms in the intervention arm of a nationwide, Danish cluster randomized trial (ACT study; planned follow-up of 18 months), using reflexive thematic analysis. Twenty-five of seventy-five eligible audio recordings were selected for variation in patient demographics (age, sex, and diagnosis), caregiver relationship, treating clinicians, and perceived goals of treatment among patients with limited treatment options from 5 Danish hematology departments.

The Danish Serious Illness Care Program includes clinician training, communication tools, preparatory materials, documentation, and scheduled conversation slots.

Communicative dynamics of how patients, caregivers, and clinicians navigate prognostic dialogue in serious illness conversations in hematology.

A total of 25 patient-caregiver dyads (50 individuals; median [IQR] patient age, 73 [67-79] years; 11 [44%] female and 14 [56%] male patients; median [IQR] caregiver age, 66 [52-72] years; 20 [80%] female and 5 [20%] male caregivers) and 16 physician-nurse teams (32 clinicians; median [IQR] physician age, 46 [41-48] years; 11 [69%] female and 5 [31%] male; median [IQR] nurse age, 38 [32-46] years; 16 [100%] female) were studied. Patients had multiple myeloma (8 [32%]), lymphoma (8 [32%]), myelodysplastic syndrome (6 [24%]), or acute leukemia (3 [12%]). A total of 18 (72%) were enrolled during treatment of relapsed disease. Preparatory materials and clinicians' conversation opening laid the foundation for prognostic dialogue. Clinicians followed patients' verbal and emotional cues of readiness or hesitation for prognostic dialogue and adjusted the depth and timing of prognostic information accordingly. Prognostic uncertainty was used to acknowledge both realistic concerns and hopes.

In this qualitative study of serious illness conversations among patients with hematologic malignant neoplasms, their caregivers, and clinicians, clinicians' attentiveness to patients' and caregivers' oscillating readiness enabled prognostic dialogue. Prognostic uncertainty served as a constructive element and resource rather than a barrier, supporting patients' preparation for the end of life while continuing to live meaningfully.