Expectations, end-of-life fears and end-of-life communication among palliative patients with cancer and caregivers: a cross-sectional study

OBJECTIVES: During serious illness, open communication with caregivers can ensure high-quality care. Without end-of-life communication, caregivers may become surrogates and decision-makers without knowing the patient’s preferences. However, expectations and fears may influence the initiation of communication. The present study investigates differences between palliative patients with cancer and caregivers regarding expectations of end-of-life communication, end-of-life fears and experiences with end-of-life communication. DESIGN: A cross-sectional study using a semi-structured interview and a paper-based questionnaire SETTING: University Hospital in Germany. PARTICIPANTS: 151 participants: 85 palliative cancer patients (mean age: 62.8 years, 65.9% male) and 66 caregivers (mean age: 56.3 years, 28.8% male). PRIMARY AND SECONDARY OUTCOME MEASURES: Expectations, end-of-life fears and experiences of end-of-life discussions. RESULTS: Patients and caregivers wish for the patient to be self-determined. In general, participants reported more positive than negative expectations of end-of-life discussions. Importantly, concerns about emotionally burdening other person was rated much higher in an informal context than a professional context (F(1,149)=316 958, p<0.001, η(p)²=0.680), even though the emotional relief was expected to be higher (F(1,149)=46.115, p<0.001, η(p)²=0.236). Caregivers reported more fears about the last period of life and more fears about end-of-life discussions than palliative patients, whereas palliative patients tended to avoid the topics of death and dying to a greater extent. CONCLUSIONS: There seems to exist a ‘self-other’ asymmetry: palliative patients and their caregivers expect substantial personal relief when openly talking about end-of-life issues, but also expect the other person to be burdened by such communication. Professionals repeatedly need to initiate end-of-life communication.