Qualitative evaluation of an integrated respiratory and palliative care service: patient, caregiver and general practitioner perspectives.

Abstract

Objectives Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care - the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals - who spoke of 'growing this plan together'; the delivery of person-centred care - where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness - while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care - while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care.