Little is known about the needs of patients with COPD in the last months of their lives. Our aim was to determine which aspects of care patients considered important and the extent of satisfaction with management of these aspects.
We enrolled hospitalized patients aged > 55 with baseline FEV1 <0.75l in 5 Canadian centres. Patients were interviewed and responded (“not at all important” to “extremely important”) to 29 questions in 6 domains: medical/nursing care; community care; communication/decision making; social relationships/support; meaningful existence and advance care planning. Additional questions addressed prognosis, CPR issues and preferred decision-making roles.
Of the 86 patients enrolled to date, 51.2% were female, 80.2% were urban-dwelling, 93% were Caucasian and 43% lived alone. Mean (SD) age was 73 (7.4) years. Of 86 patients, 61.6% felt they were currently facing end of life issues. Quality of life was rated as poor (38.4%), fair (30.2%), good (17.4%) very good (4.7%) and excellent (3.5%). 49 patients (57%) wanted discussions with physicians about CPR but only 27 (23%) had done so. The top two important aspects of care were symptom relief and trust and confidence in the treating physician. Patients were most satisfied with nursing care and opportunities to strengthen/maintain important relationships. The top 5 areas for improvement (high importance score but low satisfaction score) concerned: 1) receiving adequate information; 2) having an adequate plan for home care after discharge; 3) not being a burden on family; 4) relief of symptoms; 5) availability of the physician for easily understood discussions. Patients preferred shared decision-making regarding cardiopulmonary resuscitation.CONCLUSIONS: Symptom relief, though most important was not well addressed. Useful and understandable information was provided infrequently, suboptimally, and failed to address care after hospital discharge.
To improve quality of end of life care for patients with advanced COPD, physicians need to improve their communication, achieve better symptom relief, and provide patients with plans for care after hospital discharge.
G.M. Rocker, none.