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

Abstract

Introduction 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.

Implementation of a palliative care intervention for patients with COPD – a mixed methods process evaluation of the COMPASSION study

“…It includes advance care planning, allowing care to be tailored to the patient’s goals and preferences [ 3 ]. Despite guideline recommendations, [ 4 , 5 ] palliative care is only provided to a limited number of patients with COPD, and often, advance care planning is discussed in an acute care setting (e.g., when a patient visits the emergency department for an acute exacerbation) rather than proactively (e.g., during an outpatient visit to their regular doctor) [ 6 , 7 ]. Also, the involvement of specialist palliative care is limited and restricted to the terminal phase [ 8 ].…”

Perspectives of Respiratory Physicians toward Need and Integration of Palliative Care in Advanced Respiratory Diseases

“…[23,24] Furthermore, they perceive the condition as non-fatal due to the prolonged course of the disease that helps them adapt to it. [25] Whereas most respiratory physicians felt the need for early integration, they equally felt that it was essential to consider the patient/family's perspective for such a referral. [26,27] Most respiratory physicians recognised the importance of early integration of palliative care for advanced respiratory diseases, and only a minority believed that palliative care could be provided at the end of life reveal an attitudinal shift.…”

“…[ 23 , 24 ] Furthermore, they perceive the condition as non-fatal due to the prolonged course of the disease that helps them adapt to it. [ 25 ] Whereas most respiratory physicians felt the need for early integration, they equally felt that it was essential to consider the patient/family’s perspective for such a referral. [ 26 , 27 ]…”

A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease

“…Prognosis as a prompt for palliative care is also problematic, given the unpredictable trajectory ( 29 ) and evidence of inaccurate estimates by clinicians for patients with progressive chronic diseases ( 9 ). For instance, respiratory providers and general practitioners report reliance on the “surprise question” (SQ), which asks clinicians “Would you be surprised if this patient died in the next 12 months?”, to promote referrals ( 30 ), despite reports of poor to modest prognostic accuracy across studies of patients diagnosed with organ failure, cancer and those attending general practice ( 31 , 32 ).…”