PURPOSE:Patients with advanced COPD and/or CHF, while frequently hospitalized in their last year, spend most time in the community. These patients are often housebound, on home oxygen, have high symptom burden and often receive less than adequate education/information on self-management, especially as disease progresses towards terminal stages. We have reviewed our COPD and CHF data from a multicentre study of patients’ perceptions of quality end-of-life (EOL) care (Heyland et al CMAJ 2006) for potential clinical leadership opportunities in the community.
METHODS:In 5 Canadian Academic centres we enrolled hospitalized patients >55 years with advanced COPD (n=118) and CHF (n=106) (for definitions see table). In our questionnaire (28 elements in 5 domains (medical/nursing care; communication/decision-making; social relationships/support; meaningful existence; advance care planning) we asked respondents to rate EOL care elements in terms of importance and satisfaction. We constructed an opportunity index (OI) to reflect elements of EOL care considered extremely important but not completely satisfied, and ranked the OI to see where improvements to care were most needed.
RESULTS:6 month mortality for COPD and CHF was 37% and 47% respectively. Among top 5 greatest needs (ranked by highest OI), three were common to both COPD and CHF: improvement to symptom control (1, 4), to have adequate plans of care post discharge (2, 2), and not to be a burden to family (3, 1).
CONCLUSION:Current approaches to management of advanced COPD and/or CHF are failing, particularly in the community. The deficiencies in current care concern suboptimal symptom control, inadequate post-hospital care, and fear of burdens on families. This highlights opportunities/need for changes to models of care in the community setting to better address patient and family needs.
CLINICAL IMPLICATIONS:Changes to care models care require innovative planning. We suggest that community-based RRTs and RNs with additional education and/or experience in disease-specific EOL care are well placed to take on leadership roles in coordinating more comprehensive and holistic post-discharge care for patients and families living with advanced COPD or CHF.
DISCLOSURE:Joanne Young, None.