Abstract
BackgroundIn early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital.MethodsTwo nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and < 50% of predicted forced expiratory volume in 1 s (FEV1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel–Haenszel chi-square test and Fisher’s exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables.ResultsThe patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p < 0.001). Compared to hospital, SPC was more often the preferred place of care (p < 0.001). In SPC, EOL discussions with patients and families were more frequently held than in hospital (p < 0.001). Heart failure increased the probability of dying in hospital while lung cancer increased the probability of dying in SPC.ConclusionThis study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.
Highlights
In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden
In total, 159 patients who had died in specialized palliative care (SPC) and 439 patients who had died in hospital were identified
Smoking habits (non-smokers, ex-smokers, and still smokers Dyspnea [22] Health-related quality of life (HRQoL) measured by the Clinical COPD Questionnaire (CCQ) [23] In later registrations, health status was measured by the COPD Assessment Test (CAT) [24]
Summary
In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. At the very end of life, patients dying from COPD have similar and comparable symptoms to those dying from lung cancer [8], and are in need of qualified care. Several studies comparing lung cancer and COPD have been performed [9,10,11,12] These studies found that patients with lung cancer were more likely to receive home palliative care [9, 10] and die at home [11,12,13]. Specialized palliative care (SPC) was offered only in the last few weeks of life to COPDonly patients [12, 14], while COPD patients with comorbid lung cancer were far more likely to receive palliative care earlier in the disease trajectory [9]. Research in patients with advanced COPD disease has shown beneficial effects of home palliative care services, compared to usual care, on reducing symptom burden for patients [13]
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