SHOULD WE TELL THE PROGNOSIS TO THE COPD PATIENT?

1. SHOULD WE TELL THE PROGNOSIS TO THE COPD PATIENT? Advanced Disease And Planning End Of Life Prof. Dr. Ertürk Erdinç Ege University Medical School Department of Chest Disease

2. End stage: Which lung diseases ? • COPD • Lung cancer • IPF

3. What means end stage of pulmonary disease ? Definition • Disabling dyspnea at rest • FEV1,< 30% of predicted • Admission to ICU or hospitalizations • Hypoxemia at rest on room air • Hypercapnia • Right heart failure • Weight loss • Resting tachycardia Medicare Part A. Intermediary hospice medical policy manual http://www.iamedicare.com/provider/lmrp/meda.htm

4. Declining quality of life and FEV1 SGRQ score 100 Worse 80 60 40 20 Upper limit of normal 0 Better 10 20 30 40 50 60 70 80 90 FEV1 (% predicted) r = - 0.23 p < 0.0001 Jones. Thorax 2001

5. End-stage Lung Disease • Mortality predictors ( ½ year – 1year) for COPD are imprecise. • FEV1, PaO2, admissions, dyspnea, BMI, BODE • Recent RCT of 609 patients with severe COPD, multivariate analysis * • age, oxygen utilization, physiologic measures ( RV, TLC), exercise capacity, emphysema distribution. Am J Respir Crit Care Med 2006; 173:1326-34

6. Natural history of COPD Never smoked or not susceptible to smoke 100 75 Smoked regularly and susceptibleto its effects Stopped at 45 FEV1 (% of value at age 25) 50 Disability 25 Stopped at 65 Death 0 25 50 75 Age (years) Fletcher C et al. 1977

7. Major Problems In COPD Physical • Poor symptom control • Limited functional capacity, • Poor domestic life Social • Limited social life Psychological/ emotional • Living with crisis dying • Family sharing? • Prepare himself

8. Services that make a difference

9. Prognosis in “stable” COPD • Survival correlates with post-bronchodilatator FEV1. • Oxygen therapy improves 3-year survival. • ~70% if < 65 y/o • ~50% if > 65 • Smoking cessation reduces lung function decline. • Anticholinergic agents and steroids do not influence the rate of lung function decline. • Pulmonary rehabilitation (exercise) maximizes function in severe COPD. • What about “quality of life”? • What happens after acute respiratory failure?

10. 0-2 3-4 5-6 7-10 Outcome: COPD Predictors: Body-mass index, airflow Obstruction, Dyspnea and Exercise Capacity (BODE) index Variables and point values used for the computation of the BODE index Celli et al, NEJM, 2004; 350:1005-1012

11. “Patients did not generally realize that they were approaching the ends of their lives.” • Compared to lung cancer patients, COPD patients were worse functionally and physiologically, but survived longer. • Even in the last month of life, prognostic algorithm predicted reasonable survival (30% 6-month). • Death often followed sudden, unpredictable complications.

12. Estimates of 6-month Survival by Day Before Death Claessens, J Am Geriatr Soc, 2000

13. Declining quality of life Cancer “Poor QOL” COPD Death

14. Clarification of Terms • End of Life care • Patients with progressive irreversible advanced disease • Patients living with the condition they may die from- weeks/months/ years • ‘Ante-mortal’ care like ante-natal care • Supportive Care • Helping the patient and family cope better with their illness • Preferred by some specialists- ‘everyone needs supportive care’ • Palliative care • Physical psychological, social, spiritual care • General or specialist palliative care • Some regard as overlapping with or following curative treatment • Terminal care • Diagnosing dying-care in last hours and days of life Terminal Care Death End of Life Care Supportive Care Palliative Care

15. What kind of life-support do patients want? p>0.05 all comparisons Claessens, J Am Geratr Soc, 2000

16. Palliative care with end-stage COPD • Morphine • Can improve exercise tolerance without sedation • Not only for “comfort care only” patients • Anxiolytics ? Antidepressants ? • Treatment of osteoporosis • Terminal symptom management • Planning end of life

17. Advanced Disease- End Of Life Care • Frequent in COPD: • Exacerbations • Respiratory failure • Ventilatory support • Exitus • Therefore physicians discuss about advanced disease and end of life in stable COPD patients Claessens MT. J Am Geratr Soc. 2000

18. What To Discuss for Chronic Respiratory Disease • Identify current preferences for intubation, ventilation and CPR • No mechanical ventilation at all • Ventilation for short-term reversible situation • Long-term mechanical ventilation • Identify situations in which patient would forego life support • Unable to live independently • Unable to communicate with family • Prolonged or indefinite life support

19. Communication With Physicians: Severe COPD • Of 105 patients with severe COPD in 2 pulmonary rehabilitation programs • 94% had opinions about intubation • 99% wanted to discuss advance directives with their physician • 19% had discussed with their physician • 14% thought their physician understood their wishes • Formal written documents have not fullfilled their goals to improve end-of-life care in part because they are too general and often realistic • Comprehensive advance care planning depends on a holistic approach to patient can tailored to individual legalistic. Heffner, Am J Resp Crit Care, 1996;154:1735

20. “Doctor Did Not Discuss” Curtis, Eur Resp J, 2004; 24:200

21. Shared Decision-making About End-of-life Care • Important factors • Prognosis • Level of certainty • Roles • Patient/family: patient values & preferences • Physician: treatments that are indicated Physician decision Family decision Carlet, Intensive Care Med 2004; 30:770

22. Barriers to Communication about End-of-life Care for COPD • Only 32% of patients report discussing end-of-life care with physician • 15 barriers identified by patients • Only 2 barriers applied to >50% of patients I would rather concentrate on staying alive than talk about death --75% I’m not sure which MD will be taking care of me if I get very sick-- %64 • 7 barriers identified by physicians • Only 1 barrier applied to >50% of physicians There is too little time to discuss everything we should – 70% He is not ready to talk about what kind of care he wants if he gets sick-21% Knauft. Chest 2005; 127:2188

23. The SUPPORT study1016 severely ill patients, hospitalized with COPD and hypercapnia • Survival was not dismal. • 89% survived hospitalization. 81% went home. • 2-mo survival = 80%; 6-mo survival = 67% • 1-year, 57%; 2-year, 51% • 50% readmitted within 6 months • But survival occurred with poor function • 21% with very good QOL; 30% “good” QOL • 49% fair to poor QOL

24. SUPPORT outcome: hospitalized patients with COPD and hypercapnia

25. Communication With Physicians: Seriously Ill Hospitalized Patients SUPPORT, JAMA, 1995; 274:1591

26. Communication With Patients: Competencies • Listens to patients • Encourages questions from the patient • Talks with patients in an honest and straightforward way • Gives bad news in a sensitive way • Willing to talk about dying • Sensitive to when patients are ready to talk about death Curtis, J Gen Intern Med, 2000;16:41

27. Outline for Discussing End-of-life Care • Prior to discussion • Consider goals and agenda • Appropriate people present • During the discussion • Elicit patient’s understanding • Listen for patient’s values and perspective • Listen for and address barriers • Finish the discussion • Elicit questions • Support patient and family decisions • Develop a shared understanding

28. Decision-making About End of Life • Shared decision-making depends on good patient-physician communication • Early evidence suggests that some interventions can make a difference PATIENT EDUCATION IS THE MOST IMPORTANT COMPONENT

29. A suggested process,‘How to do?’ • Get your medical facts straight. • Collect information about the patient. • What wishes, hopes, fears, preferences, etc., does he have? • How resilient is he? • What does she imagine a “good death” to be? • Focus on the patient • Reinforce that freedom from suffering will be a shared goal.

30. A suggested process,‘How to do?’ • Discuss the situation; present the options • Ask for preferences; offer your opinion. • If there is no consensus, leave the way open for further discussion. • Know yourself. • Your biases, values, stressors, .... • If there is consensus, repeat back what you believe it to be. • Prepare forms if appropriate. • Continue to offer support. Seek the expertise and assistance of others.

31. Physician Findings Diagnosis Prognosis Treatment Patient What’s wrong? What will happen? What can be done? Breaking bad news

32. Buckman’s “SPIKES” strategy • 6-step strategy for breaking bad news • Setting • Perception • Invitation • Knowledge • Empathy • Strategy and Summary www.conversationsincare.org/web_book/chapter05.html

33. Listening empathically –PEARLS techniques

34. Major Themes by Disease Group Patients with COPD, cancer, or AIDS (n=79) • COPD • Patient education • AIDS • Pain control despite history of addiction • Cancer • Maintaining hope Curtis, Chest, 2002; 122:356

35. COPD and Five Areas of Patient Education • Diagnosis and disease process, information • Treatments: what they do and what to expect • Prognosis for survival and QOL • Advance care planning • What dying might be like Curtis, Chest 2002; 122:356

36. Best end-of-life care 5 components 2. Patients All 3 trajectories- cancer, organ failure ,frail elderly 5. Points in time Out of hours+supportat all timesfrom diagnosis 4. Places Home, hospitals, care homes, hospices, other 3. Providers Generalists-GSF, LCP, education, specialists etc 1. People Public Awareness, information, enablement- ‘Expert pt’, Self care, Carer support Advanced Care Planning

37. Patient and the Family • Course of disease • Characteristics of end-stage disease • Treatment alternatives • How is death come true? • Those informational data should be given to the patient and an opportunity expressing the requisitions of the patient should be provided. CTS recommendation for management of COPD