Abstract
BackgroundChronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD.MethodsAn online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom.ResultsFive hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p < 0.0001), what death and dying might be like (p < 0.0001) and prognosis (p = 0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services.ConclusionsWhile both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.
Highlights
Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, this occurs infrequently
The Pearson Chi-Square test was used to identify associations between participants’ responses and exposure variables measured as proportions; and Student’s t test was used for exposures measured as continuous numerical values
The majority of respiratory doctors (140, 80.9%) reported being very or quite comfortable providing a palliative approach to people with COPD
Summary
Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, this occurs infrequently. Despite many people expressing a desire to die at home, Many patients with severe COPD experience reduced quality of life due to severe, chronic breathlessness, which persists at rest or on minimal exertion despite optimal treatment of the underlying causes [5,6,7]. Psychosocial and communication needs of people with COPD [11], guidelines recommend that patients with advanced disease should receive early access to palliative care in conjunction with optimal, disease-directed therapy [1, 12]. Specialist palliative care teams support the usual treating clinician to offer a palliative approach, but have an important role in caring for people with challenging symptoms or complex needs [12]. A palliative approach and specialist palliative care are not separate entities, but may be complementary aspects of care for patients with advanced COPD
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