Fear of dying related to Parkinson's disease: Patients' and family members' view

The aim of the research was to identify fear of dying in Parkinson’s patients (PD) and their family members and compare reasons of fear according to sociodemographic characteristics and patients’ health status. The fear of dying was assessed with APND-EoLC questionnaire (Attitudes of Patients with Progressive Neurological Disease to End-of- Life Care, part Fear of Dying – 9 items). The sample consisted of 134 participants, patients with PD (mean age: 71.4 year) and their family members (mean age: 60.3) from the Czech Republic. Patients reported to have a greater fear (p < 0.0001) in the domain “Dependence/Loss of control” (mean = 79.1, 95%CI: 74.6–83.6) than in the domain “One’s own suffering” (mean = 69.3, 95%CI: 64.6–74.0). Patients worried most about “Being a burden to others” (mean = 8.2, SD = 2.2), this was most often true for widowers (p = 0.024) and patients without a care allowance (p = 0.006). On the other hand, family members (p = 0.002) were more afraid of suffering of their significant other during dying (mean = 79.3, 95%CI: 74.9–83.7) than of “Dependence/Loss of control” (mean = 71.9, 95%CI: 66.3–77.4). Family members feared most “fear of severe pain during dying” (mean = 9.1, SD = 1.6). Family members of patients without a care allowance more often feared of dependence and loss of control (p = 0.031). Fear of suffering during dying was indicated more often by patients’ children rather than their life partners (p = 0.021). Other differences were not found as significant. In the light of the emotive impact of PD in both patients and caregivers, one recommendation is for clinicians to elicit more information about feelings, such as fear of dying.