Provision of Palliative Care in Patients with COPD: A Survey Among Pulmonologists and General Practitioners

Johanna MC Broese,1,2 Rianne MJJ van der Kleij,1 Els ML Verschuur,2 Huib AM Kerstjens,3 Yvonne Engels,4 Niels H Chavannes1 1Public Health & Primary Care, Leiden University Medical Center, Leiden, the Netherlands; 2Lung Alliance Netherlands, Amersfoort, the Netherlands; 3Respiratory Medicine & Tuberculosis, University of Groningen and University Medical Center Groningen, Groningen, the Netherlands; 4Anesthesiology, Pain & Palliative Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsCorrespondence: Johanna MC BroesePublic Health and Primary Care, Leiden University Medical Centre, Post Zone V0-P, Postbox 9600, Leiden, 2300 RC, the NetherlandsEmail j.m.c.broese@lumc.nlIntroduction: Patients with advanced chronic obstructive pulmonary disease (COPD) experience significant symptom burden, leading to poor quality of life. Although guidelines recommend palliative care for these patients, this is not widely implemented and prevents them from receiving optimal care.Objective: A national survey was performed to map the current content and organization of palliative care provision for patients with COPD by pulmonologists and general practitioners (GPs) in the Netherlands.Methods: We developed a survey based on previous studies, guidelines and expert opinion. Dutch pulmonologists and GPs were invited to complete the survey between April and August 2019.Results: 130 pulmonologists (15.3%; covering 76% of pulmonology departments) and 305 GPs (28.6%) responded. Median numbers of patients with COPD in the palliative phase treated were respectively 20 and 1.5 per year. 43% of pulmonologists and 9% of GPs reported some formalized agreements regarding palliative care provision. Physicians most often determined the start of palliative care based on clinical expertise or the Surprise Question. 31% of pulmonologists stated that they often or always referred palliative patients with COPD to a specialist palliative care team; a quarter rarely referred. 79% of the respondents mentioned to often or always administer opioids to treat dyspnea. The topics least discussed were non-invasive ventilation and the patient’s spiritual needs. The most critical barrier to starting a palliative care discussion was difficulty in predicting the disease course.Conclusion: Although pulmonologists and GPs indicated to regularly address palliative care aspects, palliative care for patients with COPD remains unstructured and little formalized. However, our data revealed a high willingness to improve this care. Clear guidance and standardization of practice are needed to help providers decide when and how to initiate discussions, when to involve specialist palliative care and how to optimize information exchange between care settings.Keywords: COPD, palliative care, advance care planning, surprise question, organization