BACKGROUND: Patients and caregivers living with advanced chronic obstructive pulmonary disease (COPD) have complex care needs and may benefit from palliative care intervention. Little is known about how best to implement and evaluate such initiatives. OBJECTIVES: To determine the feasibility of: 1) implementing a customized home-based palliative care service for patients and caregivers living with advanced COPD and 2) measuring outcomes of providing such services. DESIGN: Single-centre cohort longitudinal observational study. SETTING/ SUBJECTS: Patients with advanced COPD and their caregivers were followed in their homes for 6 months. MEASUREMENTS: Health-related quality of life (HRQoL), caregiver burden, symptom severity, patient/caregiver satisfaction, utilization of acute care services, end-of-life (EOL) outcomes. RESULTS: 30 patients and 18 caregivers were enrolled over 33 months. 25 patients (83%) and 14 caregivers (77%) reached our study endpoint. 13 patients (52%) and 5 caregivers (36%) completed outcome measurements at baseline and endpoint. HRQoL, caregiver burden and symptom severity did not change. Palliative care services were welcomed and valued, yet, despite a stated preference to die at home, 16 patients who died within 18 months of study enrollment died in hospital. CONCLUSIONS: Providing home-based palliative care services for patients with advanced COPD is feasible but completing repeated questionnaires is impractical. Despite significant palliative supports, managing terminal symptoms exceeded caregivers' capacity to cope and forced hospital admission. Insights into systemic barriers and limitations of current palliative care service models can provide opportunities for local program innovation aimed at improving care for advanced COPD.
BACKGROUND:Patients and caregivers living with advanced chronic obstructive pulmonary disease (COPD) have complex care needs and may benefit from palliative care intervention. Little is known about how best to implement and evaluate such initiatives. OBJECTIVES: To determine the feasibility of: 1) implementing a customized home-based palliative care service for patients and caregivers living with advanced COPD and 2) measuring outcomes of providing such services. DESIGN: Single-centre cohort longitudinal observational study. SETTING/ SUBJECTS:Patients with advanced COPD and their caregivers were followed in their homes for 6 months. MEASUREMENTS: Health-related quality of life (HRQoL), caregiver burden, symptom severity, patient/caregiver satisfaction, utilization of acute care services, end-of-life (EOL) outcomes. RESULTS: 30 patients and 18 caregivers were enrolled over 33 months. 25 patients (83%) and 14 caregivers (77%) reached our study endpoint. 13 patients (52%) and 5 caregivers (36%) completed outcome measurements at baseline and endpoint. HRQoL, caregiver burden and symptom severity did not change. Palliative care services were welcomed and valued, yet, despite a stated preference to die at home, 16 patients who died within 18 months of study enrollment died in hospital. CONCLUSIONS: Providing home-based palliative care services for patients with advanced COPD is feasible but completing repeated questionnaires is impractical. Despite significant palliative supports, managing terminal symptoms exceeded caregivers' capacity to cope and forced hospital admission. Insights into systemic barriers and limitations of current palliative care service models can provide opportunities for local program innovation aimed at improving care for advanced COPD.
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