1. Living and Dying with COPD 15.00-15.40 Dr Patrick White Senior Lecturer King’s College London Department of General Practice and Primary Care

2. COPD – a major cause of morbidity and mortality 5-10% of the population have it 1.5% diagnosed by clinicians <1% on QOF registers c65 in an average practice of 6500 patients

3. COPD – Exacerbations and admissions Moderate and severe COPD  2-3 exacerbations a year per patient with moderate or severe disease Biggest single cause of emergency admissions Associated with major co-morbidity  All the major smoking related diseases and the major degenerative diseases

4. Deaths and COPD 23500+ COPD deaths per year compared to 28,000 deaths caused by lung cancer in England and Wales Premature death – mean age of death from COPD 76 years Only c 40% of people with COPD die from it Soon to become 4 th cause of mortality worldwide

5. The keys to COPD care Spirometry diagnosis Active COPD register Smoking cessation Pulmonary rehabilitation  Exercise, education, social engagement Drugs  Short-acting bronchodilators  Inhaled steroids  Long-acting bronchodilators  Theophyllines

6. The keys to COPD care Spirometry diagnosis Active COPD register Smoking cessation Pulmonary rehabilitation  Exercise, education, social engagement Drugs  Short-acting bronchodilators  Inhaled steroids  Long-acting bronchodilators  Theophyllines ? End of life or palliative care?

7. Advanced COPD – are research and service out of step? Powerful drive for providing palliative care for patients with advanced COPD Repeated assertions that COPD patients with <1 yr prognosis can be identified Assumption that because patients die from chronic illness their deaths can be prepared End of life research in COPD

8. Key questions Where does the drive to provide palliative care for COPD come from? Can prognosis be defined in COPD? What are the palliative care needs of people with advanced COPD?

9. Why do we think people with COPD have palliative care needs? Heavy burden of symptoms Symptoms are more severe than lung cancer but services are limited with virtually no end of life care Gore et al Thorax 2000;55(12):1000-6. Edmonds et al 2001 Palliat Med 2001;15(4):287-95. Elkington, White, et al Palliat Med 2005;19 485-91 GPs want to know if some COPD patients should be on a palliative care register End of life research in COPD

10. Why do we think people with COPD have palliative care needs? Heavy burden of symptoms Symptoms are more severe than lung cancer but services are limited with virtually no end of life care Gore et al Thorax 2000;55(12):1000-6. Edmonds et al 2001 Palliat Med 2001;15(4):287-95. Elkington, White, et al Palliat Med 2005;19 485-91 GPs want to know if some COPD patients should be on a palliative care register End of life research in COPD

11. Health and social service needs in the last year of life of COPD Retrospective questionnaire survey of the informants of 399 COPD deaths All subjects who died from COPD between Jan-Jun 2001 in four London areas Physical and psychological symptoms, day to day functioning, home oxygen, contact with services, information about the illness, place of death Elkington, White, et al Pall Med 2005 19:485-491 End of life research in COPD

12. Service Provision >35% of patients lacked regular follow up in hospital or in the community One third of patients saw their GP less than 3 monthly or never Lack of home-based services although many patients were housebound

13. Do people with COPD have palliative care needs? Symptom control Information needs Preferred place of care

14. Most who died from COPD may have had palliative care needs In the last year of life 40% had breathlessness unrelieved 68% had low mood unrelieved 51% had pain unrelieved 20% did not know they might die 70% died in hospital (for 25% of whom it was not the best place to die)

15. Palliative care of COPD as a non-malignant disease? End of life care strategy of NHS Crescendo of calls for recognition of palliative care needs of advanced COPD Seamark J Roy Coll Phys 2007; Rocker J Pall Med 2007; Curtis et al Eur Resp J 2007

16. Palliative care of COPD as a non-malignant disease Palliative care agenda – high quality care, right place, right time Patients who do not want admission Patients who want to avoid non-invasive ventilation Patients who need symptom control as a priority Patients who recover from acute exacerbations and have to go back to very poor quality of life  Challenge for primary and secondary care is to consider alternatives in COPD patients with severe disease

17. How should the palliative care needs of COPD patients be defined? Gradual transition from general routine care to palliative care? When the prognosis reaches a certain critical point? When symptoms become uncontrolled and intolerable? When death becomes a high risk?

18. Can we make an accurate prognosis in COPD? Three reviews in the last year claim it is possible to identify COPD patients within last year of life Seamark J Roy Coll Phys 2007; Rocker J Pall Med 2007; Curtis et al Eur Resp J 2007 UK Gold Standards Framework suggests that using available cross- sectional parameters we can identify people with COPD who are within a year of death http://www.goldstandardsframework.nhs.uk/

19. Making a prognosis in COPD Mortality in severe COPD is between 36% and 50% at 2 years Connors et al. Am J Respir Crit Care Med 1996;154(4 Pt 1):959-67 Almagro et al. Chest 2002;121(5):1441-8 Predictors of mortality include  Low BMI, Low FEV1, dyspnoea, low 6MWD, Fat free body mass, number of hospital admissions, maintenance oral steroids, quadriceps strength, congestive heart failure, low albumin, cor pulmonale, oxygen saturation,

20. The BODE index Score Range 0-10 Q1 0-2 Q2 3-4 Q3 5-6 Q4 7-10 Kaplan-Meier survival curve for COPD categorised by BODE Index. Celli et al, NEJM 2004

21. Palliative care needs of the most severe 110 COPD patients (87 men), mean age 73 years who survived acute hypercapnic respiratory failure after non-invasive ventilation in Hong Kong in 2002 49.1% had died within a year. Chu et al, Thorax 2004, 59, 1020-25

22. Patients’ views about end of life discussions in COPD Review of 19 patient case studies in which advanced directives against further ventilation were made Mean length of survival from the decision not to be ventilated was 210 days 11 of 19 survived more than a year Pang et al J Critical Care 2004

23. South London audit of COPD palliative care referrals 81 referrals over 2 years 68 deaths 14 discharges (2 re-referred) 1 still under palliative care

24. South London audit of COPD palliative care referrals mean age at first referral = 74.4 years  range = 50 to 92 years. Mean age at death 74.8 yrs (50-92)

25. Time between first referral to palliative care team and death

26. Place of death Frequency % Home1420.6 Hospital3957.3 Nursing Home 5 7.4 Hospice 913.2 Not known 1 1.5 Total68 100

28. EDDM last 6 wks life ( EDDM=equivalent daily dose morphine)

29. Opioid indication last 6 weeks Pain 2 Dyspnoea 18 Pain and dyspnoea 12 Not recorded 21

30. Prospective study of palliative care needs of advanced COPD White P, White S, Edmonds P, Moxham J, Gysels M, Shipman C. Funded by Guy’s and St Thomas Charity No prospective surveys of palliative care needs in COPD No reliable guidance for generalists or specialists on palliative care needs in COPD Our aim was to identify patients with palliative care needs and to define their needs

31. What we did Prospective community based survey Patients with severe COPD from GP registers Interview questionnaire (developed from qualitative study) on symptoms, impact on daily life, use of services, use of drugs, caring and dependence, views of disease and treatments, information needs Lung function, BMI, HADS, Respiratory specific quality of life, MRC dyspnoea scale, Pain questionnaire

32. Patients in the study 44 (80%) of 55 practices took part 163 (61%) of 265 eligible patients (4/6 per practice) Data on 145 with advanced disease Mean age 72 years (46-93), Female 50% FEV1 <40% expected (Quanjer et al) 88% short of breath most days/everyday 45% housebound 75% had a carer (45% in the home) Respondents at least as severe as non-respondents

33. Treatment of breathlessness in advanced COPD Breathlessness intervention service Non-pharmacological interventions:  Hand-held fan  Anxiety management  Physiotherapy Pharmacological  Opiates  Benzodiazepines  Phenothiazines Booth S, Moosavi SH, et al. Nat Clin Pract Oncol 2008 5(2):90-100. Booth S, Farquhar M, et al. Palliat Support Care 2006;4(3):287-93.

34. How does the role of prognosis in COPD compare with that in cancer? Prognosis in cancer is based on longitudinal data Every guide to prognosis in COPD uses cross- sectional data at a single point in time People with cancer see significant changes in symptoms and disability over months People with COPD develop symptoms and disability over years Issues of choice about place and type of care in advanced COPD take place in a unique context

35. What evidence is there for a palliative care approach in COPD? Needs in advanced COPD are considerable and match those of people with cancer Patients with advanced COPD are likely to have arrived at that point gradually Prognosis in COPD is not accurate enough to be useful in the short term (<one year) There are no useful disease specific indicators which indicate COPD patients suitable for a palliative care register

36. What next? Assessment of unrelieved breathless due to COPD in primary care Prognosis in COPD using longitudinal data Develop a breathlessness service for people with advanced COPD Trial of the palliation of breathlessness in advanced COPD End of life research in COPD

37. I have received speaker honoraria from AstraZeneca, Bohringer Ingelheim, Glaxo, Pfizer for speaking at scientific meetings. Patrick White King’s College London Department of General Practice and Primary Care. Declaration of interest