Palliative care for patients with chronic obstructive pulmonary disease: understanding current practices and exploring a new model of integrated care
AuthorSmallwood, Natasha Elizabeth
Document TypePhD thesis
Access StatusOpen Access
© 2018 Dr. Natasha Elizabeth Smallwood
Chronic obstructive pulmonary disease (COPD) is a highly prevalent, incurable, progressive, disease characterised by persisting respiratory symptoms and airflow limitation, which arise from airway or parenchymal abnormalities. COPD leads to significant morbidity and mortality globally, generating substantial personal, social and economic burdens. Although the development of novel COPD therapies has led to improved, disease-directed management and prolonged survival, patients with advanced COPD have unmet needs related to the sustained symptom burden, psychosocial impact, and poor understanding of their condition. Palliative care is an approach that aims to improve the quality of life of patients and their families when facing life-threatening illnesses, by actively addressing physical, psychosocial and spiritual issues. While palliative care offers well-recognised benefits, few patients with advanced COPD access any palliative care. Furthermore existing models of palliative care are poorly suited to the needs of COPD patients. New models of integrated respiratory and palliative care are promising, however, few such services exist globally or have published their outcomes. This work within this thesis aimed to examine how patients with advanced COPD are cared for, including whether they access symptom palliation or palliative care, and evaluate outcomes from a new integrated respiratory and palliative care service. To address these aims, three phases of research were conducted including: an epidemiological cohort study examining end-of-life care in hospital; surveys of specialists and junior doctors exploring approaches to symptom management and palliative care; and an evaluation of outcomes associated with a new integrated service. The epidemiological cohort study identified that recently general and respiratory physicians have increasingly provided a palliative approach to COPD patients as they are actively dying during their last few days of life. However, there were missed opportunities in the final years of life, during which few patients accessed symptom palliation or palliative care. Most doctors reported recognising and actively managing severe chronic breathlessness (including prescribing opioids) and held positive attitudes to palliative care for patients with COPD. However, several epidemiological studies suggest patients neither access symptom palliation nor palliative care therefore there is a mismatch between self-reported practices and actual clinical care. Notably respiratory and palliative care specialists had different approaches to breathlessness management, which were complementary, however current models of care were perceived as fragmented. A new integrated respiratory and palliative care service was associated with improved symptom management and access to palliative care activities, reduced unscheduled healthcare usage and fewer hospital deaths. Additionally, the service was highly acceptable to patients and caregivers, with valued aspects including continuity of care and high quality communication. While new integrated services may address current gaps in care, further testing in large clinical trials is required. In conclusion, a co-ordinated, structured, multidisciplinary, patient-focused response is needed to address the unmet needs of patients with advanced COPD. Such a response must include increased palliative care training for health professionals, clear guidelines and policies regarding palliative care for patients with advanced COPD, new models of integrated palliative care and increasing research capacity. Furthermore this approach requires sustained investment and collaboration.
KeywordsCOPD; palliation; palliative care; breathlessness; integrated care
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