Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study

Abstract

Background 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. 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. Methods Two 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. Results The 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. Conclusion This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.

Symptom assessment in the dying: family members versus healthcare professionals

“…A study has reported that the patients in specialised palliative care have benefits compared with hospitals. 22 Even considering that the patients were cared for within specialised palliative care, the results show that there was a significant difference in reported pain, anxiety and confusion between HCPs and FMs.…”

An update of palliative care in lung transplantation with a focus on symptoms, quality of life and functional outcomes

“…However, a growing body of evidence has shown PC in both interstitial lung disease (ILD) and chronic obstructive pulmonary disease (COPD) is associated with a reduced risk of hospital admissions, emergency room visits, and hospital duration [10 ▪ ,11 ▪▪ ,12 ▪▪ ,13]. Moreover, several studies highlight significant relief of dyspnea following PC [14,15], often the most burdensome symptom in this population [16]. A randomized controlled trial reported that PC moderated the progression of dyspnea in ILD patients, with those receiving PC experiencing a slower progression of dyspnea over 12 months compared to patients receiving usual care [17 ▪▪ ].…”

“…In a recent systematic review evaluating 8 studies (7 randomized control trials), Santos and Reis-Pina (2023) revealed that PC interventions improved breathlessness in patients with chronic respiratory disease [19 ▪▪ ]. Studies of other mixed nonmalignant populations (including COPD) have also demonstrated improvement in symptoms after PC intervention [14,15].…”

“Dignity as a Small Candle Flame That Doesn’t Go Out!”: An Interpretative Phenomenological Study with Patients Living with Advanced Chronic Obstructive Pulmonary Disease

“…Comorbidities arise at more advanced stages of the disease trajectory and include weight loss, which is occasionally associated with cachexia and heart failure, resulting in increased dyspnoea [ 6 ]. Depression, psychosocial distress and sleep difficulties are also prevalent and are linked to a lower quality of life and premature death [ 7 , 8 ].…”

“…Over the last two decades, there has been an increasing interest in the need and provision of palliative care for COPD patients [ 9 ]. One source of concern is whether end-of-life (EoL) care is effectively implemented [ 8 ]. According to Braço Forte and Sousa [ 10 ], “the EoL of patients with COPD is associated with progressive deterioration, worse quality of life, social isolation and absence of symptom control.…”