Measuring the quality of end-of-life care

1. Measuring the quality of end-of-life care David J Casarett MD MA Division of Geriatrics University of Pennsylvania

2. Did this patient receive good care? • 84 year old man with heart failure and pneumonia. • Admitted to the hospital, treated with antibiotics and oxygen. • Discharged 3 days later.

3. What is good care for pneumonia?

4. How do you measure the quality of care for pneumonia? • Patient received: • Antibiotics • Oxygen • Intravenous fluids • Patient was discharged from the hospital alive

5. Did this patient receive good care? • A 69 year old man with severe heart failure. • Admitted to the hospital with pneumonia, and treated with antibiotics and oxygen. • Despite the best treatment, his condition becomes worse. • He dies 3 days later.

6. What is good care for dying patients?

7. How do you measure the quality of care for dying patients?

9. Measuring the quality of care for dying patients: • Why measure the quality of end-of-life care? • A framework for measurement • Structures of care • Processes of care • Outcomes • Measuring outcomes • Prospective data • Retrospective data • One example: Measuring pain management

10. Good end-of-life care includes palliative care: • Palliative care is patient and family-centered care that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs, and culture(s). (NCCN)

11. Why measure the quality of end-of-life care? • Benchmarking • Quality improvement • Identification of best practices

12. “Benchmarking” • Identifying goals and targets for high quality • Examples: • We should assess the pain of all patients • We should use strong opioids (morphine) for severe pain in all patients

13. “Quality improvement” • Interventions to improve the quality of care that patients receive. • Examples: • Training for physicians and nurses about how to assess pain • Reminders to assess pain in all patients • Pharmacy suggestions about which opioids to use

14. “Best practices” • Procedures and rules that lead to better care • Examples: • One hospital uses a pain assessment form as part of the admissions process, ensuring that all new patients have their pain assessed • One hospital created rules to guide physicians in using strong opioids (morphine) when appropriate.

15. Measuring quality of end-of-life care • Measuring quality of end-of-life care makes it possible to do benchmarking, quality improvement, and to identify best practices. • But: How do we measure the quality of end-of-life care?

16. 3 ways to measure quality • Structures of care • Processes of care • Outcomes of care

17. Structures, Processes, and Outcomes STRUCTURES PROCESSES OUTCOMES

18. “Structures of care” • Aspects of the health care system that contribute to better quality of care • Examples: • Staffing • Training • Protocols • Procedures

19. What structures would lead to better quality end-of-life care? • Staffing—Dedicated physicians and nurses for palliative care • Training of all staff in palliative care • Palliative care teams • Protocols for pain management • Procedures for pain assessment

20. Advantages of measuring structures • Easily measured through surveys or existing data • Easy to compare hospitals • Quick indicators of needs/problems

21. Disadvantages of measuring structures • Not usually responsive to change • Not always related to quality • Generally not sufficient to demonstrate effectiveness or success

22. Processes STRUCTURES PROCESSES OUTCOMES

23. “Processes of care” • Care that is delivered to patients in order to improve the quality of care • Examples: • Assessing pain and other symptoms • Prescribing medications • Prescribing non-medical treatment

24. What processes would lead to better quality end-of-life care? • Assessing pain • Having patient seen by a palliative care service • Prescribing opioids (morphine) • Using a bowel regimen alongside opioids

25. Advantages of measuring processes • Easily measured (in some settings) • Responsive to improvement efforts/funding

26. Disadvantages of measuring processes • May be more associated with better care in some hospitals than others • Positive results may offer false sense of improvement • Processes not always associated with better care*

27. *Processes and outcomes • One physician prescribes morphine to all of his patients with cancer • Another physician prescribes morphine to half of his patients with cancer • Which physician is providing better care? • ?

28. Outcomes STRUCTURES PROCESSES OUTCOMES

29. “Outcomes of care” • The effect that structures and processes have on the patient • Examples • Control of symptoms • Quality of life • Comfort • Being with family

30. What outcomes of care are important to patients near the end of life? • Pain • Other symptoms • Adequate control over health care decisions (patient’s perspective) • Family adjustment after death

31. Advantages of measuring outcomes • Ideal measure of needs • Measured from the patient’s perspective

32. Disadvantages of measuring outcomes • Change may be slow • Positive/negative results may be due to other factors • Accurate measurement is often: • Difficult • Expensive

33. Which outcomes are most important? • The patient’s spiritual and psychological well-being • Continuity of care across providers and care settings • The patient’s physical comfort • Information and control over treatment • Family adjustment after death • Family psychological, spiritual, and social well-being

34. The patient’s physical comfort • Pain • Nausea • Pruritis • Constipation • Dyspnea • Thirst • Dry mouth • …

35. The patient’s spiritual and psychological well-being • Psychological: • Depression • Anxiety • Confusion • Spiritual/emotional • Peacefulness • Sense of community • Reconciliation with friends/family

36. Information and control over treatment • Culturally appropriate understanding of treatment options • Culturally appropriate understanding of prognosis and illness trajectory • Treatment consistent with preferences • Site of death consistent with patients’ and families’ goals

37. Family psychological, spiritual, and social well-being • Family’s acceptance of death • Reconciliation • Caregiver burden • Provisions for family members and children

38. Continuity of care across providers and care settings • Continuity of information • Continuity of treatment • Continuity of health care providers

39. Family adjustment after death • Adjustment • Contribution of grief support (formal/informal) • Guilt/acceptance

40. “Prospective” vs. “Retrospective” measurement? • Prospective: Going forward • Retrospective: Asking patients or families to remember

41. Prospective data: Advantages and disadvantages • Advantages: • “Gold standard” of data collection (from patients) • Disadvantages: • Challenges of identifying patients near the end of life • Challenges of data collection

42. What proportion of patients near the end of life can provide data? • 65% (Fowler 1999) • 65% (Lynn 1997) • 50-63% (Hospice)(Casarett 2004, Casarett 2005, Rickerson 2005) • Declines over time (Stromgren 2005) • 82% at baseline • 70% at week 1 • 69%-52% at weeks 2 – 13

43. The problem of attrition in a hospice population

44. Trajectories of functional decline CHF/COPD Cancer Dementia

45. Retrospective (patient-level) data: Advantages and disadvantages • Advantages: • Does not require interaction with patients who are seriously ill • “end-of-life” patients are already defined • Best way to assess family’s experience, especially after patient’s death • Economical • Disadvantages: • Biased/inaccurate responses • Not all patients have surrogates

46. How accurate are families’ recollections of care? • Ahmedzai (1988) poor agreement (patient-family pre-death) in all symptoms except dyspnea. (Higher scores from families) • Milne (2005) better agreement for physical symptoms than for psychosocial well-being (pre-death) ---------------------------------------------------------------------------- • Higginson (1996) better agreement (pre- vs. post- death) for service provision and communication than for symptom control. • Klinkenberg (2003) better agreement for physical symptoms than for psychological symptoms (pre- vs. post-death) • Hinton (1996) Patient-family ratings during illness and then after death (families). Good agreement about incidence, less for severity of physical/psychological symptoms.

47. Finding a surrogate • No surrogate • Not available • Moved/no forwarding address • None • “Wrong” surrogate • Changing surrogate

48. Finding a surrogate Consent: 55% Knowledgeable: 64% Reachable: 70% Surrogates: 85% Patient deaths

49. Finding a knowledgeable surrogate • 79% (Klinkenberg 2003) • 37% (Curtis 2002) • 90% (Casarett 2004) • 69% (Seale 1995) • 38%(?) (Teno 2003)

50. Potential response bias? Patients with surrogates: • Differences: • Older • Fewer ADL dependencies • More likely to be white • More likely to have private insurance and/or Medicare • BUT: Generally small effect