Abstract
BackgroundThe Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients’ and carers’ experiences of integrated palliative care and identify valued aspects of care.MethodsAll current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher.ResultsEighty-eight responses were received from 64 (80.0%) eligible patients and from 24 (60%) eligible carers. Most participants (84, 95.5%) believed the integrated service helped them to manage breathlessness and nearly all participants (87, 98.9%) reported increased confidence managing symptoms. One third of patients (34.4%) had received a nurse-led domiciliary visit, with nearly all regarding this as helpful.Most participants believed the integrated respiratory and palliative care team listened to them carefully (87, 98.9%) with opportunities to express their views (88, 100%). Highly valued aspects of the service were continuity of care (82, 93.2%) and long-term care (77, 87.5%). Three quarters of participants (66, 75.0%) rated their care as excellent, with 20.5% rating it as very good. Nearly all (87, 98.9%) participants reported that they would recommend the service to others.ConclusionsPatients and carers expressed high levels of satisfaction with this model of integrated respiratory and palliative care. Continuity of care, high quality communication and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.
Highlights
IntroductionGiven the unmet palliative care needs of patients with advanced, non-malignant, respiratory disease [7, 9, 11, 12], new, accessible services are required, which offer individualised, integrated, palliative care together with diseasedirected, respiratory care
The Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases
One hundred and fifty-five patients accessed the Advanced Lung Disease Service (ALDS) before commencement of the survey, of whom 54 patients had died and 15 had been discharged
Summary
Given the unmet palliative care needs of patients with advanced, non-malignant, respiratory disease [7, 9, 11, 12], new, accessible services are required, which offer individualised, integrated, palliative care together with diseasedirected, respiratory care. Such services should build (2019) 18:7 on existing services provided by respiratory medicine or rehabilitation teams [13, 14] and should aim to reduce patients’ fears of abandonment by their treating team and offer extended consultations so that there is sufficient time to discuss complex issues [15]. This study aimed to assess patients’ and carers’ experiences of the ALDS, identify valued aspects of the service and determine priorities for service development
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