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      Attitudes to specialist palliative care and advance care planning in people with COPD: a multi-national survey of palliative and respiratory medicine specialists

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          Abstract

          Background

          Chronic 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.

          Methods

          An 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.

          Results

          Five 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.

          Conclusions

          While 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.

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          Most cited references19

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          Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness.

          Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated via expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The a priori target agreement for each question was 70%. Findings were discussed at a multinational workshop.The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability. A stated duration was not needed for "chronic". Key terms for French and German translation were also discussed and the need for further consensus recognised, especially with regard to cultural and linguistic interpretation.We propose criteria for chronic breathlessness syndrome. Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.
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            Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea.

            To determine the efficacy of oral morphine in relieving the sensation of breathlessness in patients in whom the underlying aetiology is maximally treated. Randomised, double blind, placebo controlled crossover study. Four outpatient clinics at a hospital in South Australia. 48 participants who had not previously been treated with opioids (mean age 76, SD 5) with predominantly chronic obstructive pulmonary disease (42, 88%) were randomised to four days of 20 mg oral morphine with sustained release followed by four days of identically formulated placebo, or vice versa. Laxatives were provided as needed. Dyspnoea in the morning and evening as shown on a 100 mm visual analogue scale, quality of sleep, wellbeing, performance on physical exertion, and side effects as measured at the end of the four day treatment period. 38 participants completed the study; three withdrew because of definite and two because of possible side effects of morphine (nausea, vomiting, and sedation). Participants reported significantly different dyspnoea scores when treated with morphine: an improvement of 6.6 mm (95% confidence interval 1.6 mm to 11.6 mm) in the morning and of 9.5 mm (3.0 mm to 16.1 mm) in the evening (P = 0.011 and P = 0.006, respectively). During the period in which they were taking morphine participants also reported better sleep (P = 0.039). More participants reported distressing constipation while taking morphine (9 v 1, P = 0.021) in spite of using laxatives. All other side effects were not significantly worse with morphine, although the study was not powered to address side effects. Sustained release, oral morphine at low dosage provides significant symptomatic improvement in refractory dyspnoea in the community setting.
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              Determinants of depression in the ECLIPSE chronic obstructive pulmonary disease cohort.

              Depression is prevalent in patients with chronic obstructive pulmonary disease (COPD); however, its etiology and relationship to the clinical features of COPD are not well understood. Using data from a large cohort, we explored prevalence and determinants of depression in subjects with COPD. The Evaluation of COPD Longitudinally to Identify Predictive Surrogate Endpoints study is an observational 3-year multicenter study that enrolled smokers with and without COPD and nonsmoker controls. At baseline, several patient-reported outcomes were measured including the Center for Epidemiologic Studies of Depression Scale. For the purposes of this analysis, depression was defined as a score of 16 and higher on this scale, which reflects a high load of depressive symptoms and has a good correspondence with a clinical diagnosis of major depression. The study cohort consisted of 2,118 subjects with COPD; 335 smokers without COPD (smokers); and 243 nonsmokers without COPD (nonsmokers). A total of 26%, 12%, and 7% of COPD, smokers, and nonsmokers, respectively, suffered from depression. In subjects with COPD, higher depression prevalence was seen in females, current smokers, and those with severe disease (Global Initiative for Obstructive Lung Disease [GOLD]-defined). Multivariate modeling of depression determinants in subjects with COPD revealed that increased fatigue, higher St. George's Respiratory Questionnaire for COPD patients score, younger age, female sex, history of cardiovascular disease, and current smoking status were all significantly associated with depression; physiologic and biologic measures were weak or nonsignificant descriptors. Depression is more prevalent in subjects with COPD compared with smokers and nonsmokers without COPD. Clinical and biologic measures were less important determinants of depression in COPD than disease symptoms and quality-of-life. Clinical trial registered with www.clinicaltrials.gov (NCT 00292552).
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                Author and article information

                Contributors
                03 9342 7708 , Natasha.smallwood@mh.org.au
                David.Currow@uts.edu.au
                sarablackwater59@icloud.com
                anna.spathis@addenbrookes.nhs.uk
                Louis.irving@mh.org.au
                Jennifer.philip@svha.org.au
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                15 October 2018
                15 October 2018
                2018
                : 17
                : 115
                Affiliations
                [1 ]ISNI 0000 0004 0624 1200, GRID grid.416153.4, Department of Respiratory and Sleep Medicine, , The Royal Melbourne Hospital, ; Melbourne, VIC 3050 Australia
                [2 ]ISNI 0000 0001 2179 088X, GRID grid.1008.9, Department of Medicine (Royal Melbourne Hospital), , University of Melbourne, ; Melbourne, VIC 3050 Australia
                [3 ]ISNI 0000 0004 1936 7611, GRID grid.117476.2, IMPACCT - Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, , University of Technology Sydney, ; Ultimo, NSW Australia
                [4 ]ISNI 0000000121885934, GRID grid.5335.0, University of Cambridge, ; Cambridge, UK
                [5 ]ISNI 0000 0004 0383 8386, GRID grid.24029.3d, Cambridge University Hospitals NHS Foundation Trust, ; Cambridge, UK
                [6 ]ISNI 0000 0001 2179 088X, GRID grid.1008.9, Palliative Medicine, St Vincent’s Hospital and Victorian Comprehensive Cancer Centre, , University of Melbourne, ; Melbourne, Australia
                [7 ]ISNI 0000 0000 8606 2560, GRID grid.413105.2, St Vincent’s Hospital, ; Victoria Parade, Melbourne, VIC 3065 Australia
                Author information
                http://orcid.org/0000-0002-3403-3586
                Article
                371
                10.1186/s12904-018-0371-8
                6190649
                30322397
                2b183499-2914-454b-83d3-d05da186ae59
                © The Author(s). 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 31 July 2018
                : 1 October 2018
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Anesthesiology & Pain management
                copd,survey,health professionals,palliative care,attitudes,advance care planning

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