Patient-caregiver concordance on death preparedness over Taiwanese cancer patients' last 6 months

Background: Worldwide patient-caregiver concordance on cognitive prognostic awareness (PA) has been extensively examined, but concordance on sufficient (ie, cognitive and emotional) death preparedness is unexplored. We comprehensively examine the evolution of patient-caregiver concordance on death preparedness over the patient's last 6 months.

Materials/methods: This study re-examined data from 2 cohort studies on 694 dyads of cancer patients and their caregivers recruited from a single medical center in Taiwan. Patient and caregiver death-preparedness states were individually identified by latent transition analysis. Patient-caregiver concordance was examined by percentages and kappa coefficients.

Results: No-, cognitive-, emotional-, and sufficient-death-preparedness states were identified for both groups. The no-death-preparedness state reflects neither accurate PA nor adequate emotional preparedness for death. The sufficient-death-preparedness state reflects accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness states, participants had only accurate PA or adequate emotional-death preparedness, respectively. Prevalence of the sufficient-death-preparedness state increased substantially for patients but decreased slightly for caregivers. Membership in the no- and emotional-preparedness states declined throughout the last 6 months with substantially lower prevalence for caregivers than for patients, whereas the prevalence of the cognitive-death-preparedness state increased. Concordance was poor throughout the patient's last 6 months (percent concordance: 31.6% [95% CI, 24.7%, 38.5%]-43.5% [39.2%, 47.9%], kappa: 0.077 [-0.009, 0.162]-0.115 [0.054, 0.176]) with significant improvement in the last month only.

Conclusion: Poor patient-caregiver concordance on death-preparedness states likely reflects the cultural practice of family-consent prognostic disclosure, patients' adjustment for death, and difficulties in patient-caregiver communication on end-of-life (EOL) issues, indicating targets for improving EOL care.