Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.
Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.
Results In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: −44.04% and 95% CIs −75.65 to −12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: −0.35% and 95% CI −0.58 to −0.11 on IES and coefficient: −0.22% and 95% CI −0.40 to −0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: −3.29% and 95% CI −6.32 to −0.25 on IES and coefficient: −3.22% and 95% CI −5.24 to −1.20 on CES-D).
Conclusions Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.
- quality of life
- end of life care
- family management
- hospice care
- respiratory conditions
- terminal care
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Y-HL and J-SW contributed equally.
Contributors Y-HL contributed to data collection and data interpretation. J-SW assisted in data analysis, critical data interpretation and data management. RC contributed to critically revising this manuscript for intellectual content and data interpretation. S-JH contributed to critically revising this manuscript for intellectual content and hypothesis generation. S-SC contributed to critically revising this manuscript for intellectual content and interpretation of data. YCC was in charge of the study design, data collection, writing, and study supervision.
Funding This work was supported by the Department of Health, Taipei City government, through grant 10701-62-028.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The study ethical protocol was approved by the Institutional Review Board of Taipei City Hospital (TCHIRB: 10608103-E).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. Please contact corresponding author for more detail.