Cross Party Group in the Scottish Parliament on Palliative Care COPD & Palliative Care The British Lung Foundation Scotland • Information • S upport • Campaigning • Research Wednesday 5 March 2008 1
Cross Party Group in the Scottish Parliament on Palliative Care What is COPD? • Chronic obstructive pulmonary disease (COPD) is a disease state characterised by airflow limitation that is not fully reversible. The airflow limitation is usually both progressive and associated with an abnormal inflammatory response of the lungs to noxious particles or gases. Causes of COPD • 80% + smoking related • Occupational • Environmental • Genetic Wednesday 5 March 2008 2
Cross Party Group in the Scottish Parliament on Palliative Care Prevalence of COPD Percent Change in Age-Adj usted Death Rates, U.S Percent Change in Age-Adj usted Death Rates, U.S ., 1965-1998 ., 1965-1998 Coronary All Other Coronary All Other Stroke Stroke Other CVD Other CVD COPD COPD Heart Causes Heart Causes Disease Disease –59% –64% –35% +163% –7% –59% –64% –35% +163% –7% Source: NHLBI/NIH/DHHS Source: NHLBI/NIH/DHHS 12 10 Most common causes of death (Scotland) 2003-2005 10 8 (% ) 6 4 2 0 Chronic ischaemic heart disease Malignant neoplasm of bronchus and lung Pneumonia, organism unspecified Stroke, not specified as haemorrhage or infarction Malignant neoplasm without specification of site Malignant neoplasm of breast Acute myocardial infarction Other chronic obstructive pulmonary disease Unspecified dementia Sequelae of cerebrovascular disease Wednesday 5 March 2008 3
Cross Party Group in the Scottish Parliament on Palliative Care Prevalence & mortality of COPD in Scotland • Primary care data suggests over 90,000 people living with COPD in Scotland Male COPD - PTI Contacts Female 140,000 120,000 100,000 80,000 60,000 40,000 20,000 0 2003/04 2004/05 Prevalence by healthboard 04/05 COPD - Prevalence per 1000 05/06 30 25 20 15 10 5 0 Argyll & Ayrshire & Borders Dumfries & Fife Forth Valley Grampian Glasgow Highland Lanarkshire Lothian Orkney Shetland Tayside Western Scotland Clyde Galloway Greater Isles Arran Wednesday 5 March 2008 4
Cross Party Group in the Scottish Parliament on Palliative Care Prevalence & Mortality of COPD in Scotland? • Primary care data suggests over 90,000 people living with COPD in Scotland 4,600 Number of deaths 4,400 4,200 4,000 3,800 3,600 1997 1998 1999 2000 2001 Epidemiology of COPD 1 0 0 0 New cases in 2001 8 0 0 6 0 0 4 0 0 2 0 0 0 4 4 4 4 4 4 4 4 4 1 2 3 4 5 6 7 8 - - - - - - - - - 0 0 0 0 0 0 0 0 0 1 2 3 4 5 6 7 8 A g e b a n d Wednesday 5 March 2008 5
Cross Party Group in the Scottish Parliament on Palliative Care Who is living with and dying from COPD Hospital use by Deprivation Category Dep Cat Episodes per 10,000 people 1 (affluent) 563 19 2 1,697 24 3 2,951 27 4 4,031 32 5 3,004 40 6 2,446 45 7 (deprived) 2,509 74 All 17,201 34 The Changing Political Context • Not a national priority • Developing clinical standards • Recognition of the needs of patients • Awareness that we need to do “ something” about non-malignant palliative care Wednesday 5 March 2008 6
Cross Party Group in the Scottish Parliament on Palliative Care The real burden of disease • Isolation and depression • Fear and anxiety • Low expectations • Quality of life • Access to services What are the palliative care needs of patients with CLD? Chronic Lung Disease S ymptom Burden Lung Cancer 94% Dyspnoea 78% 77% Pain 85% 59% Cough 56% 47% Sickness 46% 68% Anorexia 76% 44% Constipation 59% 65% Insomnia 60% 71% Low Mood 68% Edmonds, Pall Med 2001;15:287-285 Wednesday 5 March 2008 7
Cross Party Group in the Scottish Parliament on Palliative Care What are the palliative care needs of patients with CLD? COPD vs Lung Cancer; quality of life • Anxiety/Depression levels higher • Quality of life poorer including pain • Information needs not met both groups • Social support lacking for both in community • Specialist palliative care lung cancer only • COPD intermittent support from respiratory nurse Gore Thorax 2000 ; 55: 1000-6 Why do we find palliative care for respiratory patients so difficult? • Terminal phase difficult to define • Many near death episodes • Palliative Care is for cancer patients only • Palliative care is only for the dying • Very low patient expectations Wednesday 5 March 2008 8
Cross Party Group in the Scottish Parliament on Palliative Care Results for patients LC patients knew they were dying LC more likely to die in a hospice CLD die in hospital CLD often die within 24hrs of admission CLD needed more help with self care LC more community nurse & palliative Care Edmonds et al Pall Med 2001;15 287-295 What patients do NOT want to hear • Its too difficult • We’ ll get “ swamped” • Their j ourney is wrong What patients want to hear • The same as… … … … … … … … … … … . Wednesday 5 March 2008 9
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