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.
BACKGROUND: Predicting the survival of non-cancer related end-stage-liver-disease patients in general practice has been difficult for physicians because of the extremely variable trajectories due to multiple complex clinical factors, hence it remains a challenging issue to date. This study aimed to develop and validate a specific prognostic scoring system to early recognize the prognosis and improve the quality of end-of life care for non-cancer end-stage-liver-disease population.
MATERIALS AND METHODS: A multicentre, retrospective cohort study was conducted during January 2010 ~ December 2012 and continued follow-up until December 2014. A cox proportional hazard regression analysis was used to derive and validate an optimized model. The main outcome measures were the 28-day, 3-month, 6-month, and 12-month mortality prediction. The performance of the novel model was evaluated, including discrimination and calibration.
RESULTS: A total of 4,080 consecutive subjects were enrolled. The AUROCs for the 3-month survival discrimination in the MELD, MELD-Na and novel model were 0.787, 0.705 and 0.804 (P<0.001); the 6-month survival discrimination were 0.781, 0.702 and 0.797 (P<0.001); the overall survival discrimination were 0.771, 0.694 and 0.785 (P = 0.002) respectively, whereas the novel model showed a significantly higher discrimination power than did the MELD and MELD-Na for the 3-month, 6-month and overall survival prediction. In addition, calibration of external validation cohort showed no statistical difference in all 5 groups compared with the observed groups.
CONCLUSION: This is a clinically relevant, validated scoring system that can be used sequentially to stratify the prognosis in non-cancer cirrhotic populations, which may help the patients along with medical team in decision making to improve the quality of end-of-life care.