QUALITY IMPROVEMENT AND THE DEVELOPMENT OF QUALITY INDICATORS FOR PALLIATIVE CARE

1. QUALITY IMPROVEMENT AND THE DEVELOPMENT OFQUALITY INDICATORS FOR PALLIATIVE CARE Hospice and Palliative Care: 2012 Update for the Specialist Team Marilyn Bookbinder, PhD, RN, FPCN Mbinder@chpnet.org

2. Objectives • Review state-of-the-art-indicators used to address quality end-of-life care • Describe a conundrum in the measurement of end-of-life indicators • Introduce a Tracer EoLC measurement approach for improving end-of-life care

3. Take Home Message • Choose one indicator to start tracking by TOMORROW morning

4. Quality Indicator: Definition • Are multidimensional, accessible measures that can be used to gage performance in health care • are evidence based and can be used to identify variations in the quality of care provided on both an inpatient and outpatient basis Source: Marybeth Farquhar, R.N., M.S.N., C.A.G.S., Senior Advisor, Quality Indicators Initiative Center for Delivery, Organization, and Markets. E-mail: Marybeth.Farquhar@ahrq.hhs.govWhat Are the AHRQ Quality Indicators? Available at: http://www.ncbi.nlm.nih.gov/books/NBK2664/

5. Reference MD: Quality Indicators Definition: • Norms, criteria, standards, and other direct qualitative and quantitative measures used in determining the quality of health care. • Operating Principle: What’s measured get’s managed

6. state-of-the-art-indicators used to address quality end-of-life care

7. Quality Indicators for Cancer End-of-Life Care • More developed evidence • pain, • dyspnea, • communication/care planning/decision-making, • psychosocial issues. • Less developed evidence • communication about chemotherapy, • depression, • coordination/continuity/care transitions, • spirituality/closure. Seow H, Snyder CF, Shugarman LR, Mularski RA, Kutner JS, Lorenz KA, Wu AW, Dy S. Developing quality indicators for cancer end-of-life care: proceedings from a national symposium. Effective Health Care Research Report No. 20. (Prepared by Johns Hopkins University DEcIDE Center Under Contract No. 290-2005-0034I). Rockville, MD: Agency for Healthcare Research and Quality. April 2010. Available at: http://effectivehealthcare.ahrq.gov/reports/final.cfm.

8. Example of More Developed IndicatorCommunication/ Care planning/Decision-making • Definition: • Conversations about care, treatment decisions, needs, and goals of care between the care team, including physicians, and the patient and family. • Metric: • The % of documented verbal conversations or family conferences, including other forms, such as informational pamphlets. http://effectivehealthcare.ahrq.gov/reports/final.cfm.

9. Example of Less Developed Indicator: Depression • Metric: • For patients who screen positive for depression, the % who receive further assessment, counseling or medication treatment.” http://effectivehealthcare.ahrq.gov/reports/final.cfm.

10. Cancer End-of-Life Indicators: Summary • End-of-life indicators have less high quality research evidence and more expert consensus and demonstrations of improved outcomes. • Patient-reported outcomes are preferred over administrative data or medical records except for a few screening indicators. • Better documentation of communication and coordination are needed to improve care. • Improving end-of-life care remains challenging, however the urgency to do so intensifies as patient outcomes at the end-of-life continue at suboptimal levels despite improvement efforts. • Only through developing better quality indicators and improving their use can we measure where providers most need to improve and accurately document the impact of our interventions. http://effectivehealthcare.ahrq.gov/reports/final.cfm.

11. http://www.hpoe.org/Reports-HPOE/palliative_care_services_solutions_better_patient_care.pdfhttp://www.hpoe.org/Reports-HPOE/palliative_care_services_solutions_better_patient_care.pdf

12. Useful Metrics to Measure Impact and Value of Hospital Palliative Care Programs Operational Indicators • New consults/month & trend • Consult volume as % of hospital admissions • F/u visits seen; average daily census • Annual consults per clinical palliative care FTE • LOS pre- and post-consultation • Discharge status (to SNF, hospice, etc.) • Deaths as % of consults seen • % of hospital deaths seen by palliative care Source: Palliative Care Services: Solutions for Better Patient Care and Today’s Health Care Delivery Challenges. Health Research & Educational Trust, Chicago: November 2012. Accessed at www.hpoe.org

13. Appendix C. Useful Metrics to Measure Impact and Value of Hospital Palliative Care Staff Productivity • Consults & f/u care by provider • Billed services by provider and for team • Hours of clinical time by provider (vs. budget) • Other team accomplishments for month Processes of care • Mean & median response time (difference between time of consult requested and consult seen) • % time > target threshold (such as 24 hours) • % with documented communication with referring physician pre- and post-consult • % of consults meeting documentation standards for symptom management, goals of care discussions, transition management and family support Quality • Symptom management impact • Patient/family satisfaction with care • Provider satisfaction with consultative services

14. Useful Metrics to Measure Impact and Value of Hospital Palliative Care (cont.) Financial • Monthly costs per consult (costs/volume) • Net billing revenue (overall and by consult) • % of patients in ICU w/ LOS >7 days prior to consult (example of a measure that matches a quality initiative with a likely financial impact) • % of consulted patients with readmissions • Annual “cost avoidance” impact

15. Quality Indicators for EOL care in ICU’s • Patient- and family-centered decision making • Communication • Continuity of care • Emotional and practical support • Symptom management and comfort care • Spiritual support • Emotional and organizational support for intensive care unit clinicians. Clarke EB et al. Quality indicators for end-of-life care in the intensive care unit. Robert Wood Johnson Foundation Critical Care End-Of-Life Peer Workgroup Members. Crit Care Med. 2003 Sep;31(9):2255-62. Source: Center for Applied Ethics and Professional Practice, University of Washington, Seattle, USA.

16. Vanhaecht K, Sermeus W. The Leuven clinical pathway compass. J Integrated Care Pathways 2003;7:2–7

19. Describe conundrums in the measurement of end-of-life indicators

20. References: Family Satisfaction with EOL Care Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004; 291(1):88-93. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002 Jul;24(1):17-31. Casarett D, Pickard A, Bailey FA, Ritchie CS, Furman CD, Rosenfeld K, et al. A nationwide VA palliative care quality measure: the family assessment of treatment at the end of life. J Palliat Med. 2008 Jan-Feb;11(1):68-75. Rhodes R, Mitchell S, Miller S, Connor S, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage 2008;35(4):365-71. Kirchhoff KT, Beckstrand RL. Critical care nurses' perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients. Am J Crit Care. 2000; 9(2):96–105 Kirchhoff KT, Faas AI. Family support at end of life. Adv Crit Care. 2007;18:426-35. Barry CL, Carlson MD, Thompson JW, Schlesinger M, McCorkle R, Kasl SV, Bradley EH. Caring for grieving family members: results from a national hospice survey. Med Care. 2012;50(7):578-84. 

21. Family Members as Proxy Measures of Patient Satisfaction Family reports about decision-making, communication, spiritual and cultural support, emotional support and continuity of care pose challenges. • When families “hear bad news, they lose their ability to take in all the information.” • The transition phase of the family perspective from cure to care becomes a “gray area” in which the ability to cope depends on several factors. • Surrogates may under- or over-reported patients' symptoms and preferences at end-of-life, noting how the turmoil of bereavement may have colored the families" perceptions in ways that care is provided (source: references)

22. National Survey of US Hospices • Limited financial incentives exist to provide more than a minimal level of care [to families]” because the quality of services provided are proportionally correlated to Medicare reimbursement. • National survey of 591 US hospices (9/2008 to 11/2009) concluded that “nonfinancial incentives to encourage the provision of high-quality family support in hospice might include the development of a national quality measurement and reporting mechanism”. Barry CL, Carlson MD, Thompson JW, Schlesinger M, McCorkle R, Kasl SV, Bradley EH. Caring for grieving family members: results from a national hospice survey. Med Care. 2012;50(7):578-84. 

23. Introduce a Tracer EoLC measurement approach for improving end-of-life care

24. Validation of a Chart and Key Informant Audit Tool for Dying Inpatients AIM: To validate and test an evidence-based audit-and-feedback instrument Marilyn Bookbinder, PhD, RN (PI) CO-INVESTIGATORS: Russell K. Portenoy, MD (Chairman, DPMPC); Pauline Lesage, MD (Division Head, Palliative Care, DPMPC); Peter Homel. PhD (Director, Biostatistics, DPMPC); Mary Walsh, RN, MSN (Chief of Patient Care Services: BIMC); Fran Silverman, MSW (Chief, Social Work Services, BIMC) Amandine Hugodot, Research Coordinator 2010

25. Family Nurse(s)/SW/ Chaplain Physician(s) Chart Professional Caregiver Interview tool Brief Physician Questionnaire (Globals) Brief Family Question-naire (Globals) Chart Audit Tool After Bereaved Family Member Interview Tool (Teno) Interviews Patient Tracer & Globals Family Globals Figure 1: CIT-DI Conceptual Schema

26. Domains (Best Practices) of Quality End-of-Life Care • Symptom Control • Communication • Decision Making • Traditions, Customs, or Way of Life • Religious and/or Spiritual Care • Psychosocial Care • Last Hours of Living • After the Death • 9. Overall Patient Care • 10. Overall Family Care

27. DPMPC Department ProjectsPalliative Care Division • Tracer-EoLC Validation Study • Phase 1: Pilot (Aug 2009 to Jan 2010) • Field-tested tools in 45 deaths • Gathered preliminary data about content validation, feasibility, and acceptability of the measure in a tracer methodology • Phase 2: Further validation (April to Dec. 2010) • Assessed 100 deaths from 4 Karpas, MICU, and medical units using four tools • Chart audit tool • Professional caregiver interview (includes items for nurses, social work, chaplaincy) • Physician interview or on-line survey • Family after-death caregiver interview

28. DPMPC Department ProjectsPalliative Care Division • Tracer-EoLC Validation Study • Phase 2: Data analyzed included • 455 staff interviews (nurse, physician, chaplain, social worker) • 143 charts reviewed • 71 after-death interviews of family caregivers • From these data • Revised Tracer-EolC tool • Submitted NIH grant with The Joint Commission for the next study

29. Patient Sample (N=145)

30. 8/2009 – 1/2011 Support provided by the US Cancer Pain Relief and the Ho-Chiang Foundation Validation of a Chart and Key Informant Audit Tool for Dying Inpatients (CIT-DI): Other Medical Units Summary

31. Professional Caregiver Tool N = 34

32. Best Practice 1 SYMPTOM CONTROL

33. Global Rating: Symptom Control Overall, how would you rate the care the patient received in the area of symptom control? Professional Caregiver Tool N = 38 Bereaved Family Member Tool N = 16

34. Best Practice 2 COMMUNICATION

35. Global Rating: Communication Overall, how would you rate the quality of communication the patient received? Professional Caregiver Tool N = 29 Physician Tool N = 12 Bereaved Family Member Tool N = 15 Overall, how would you rate the quality of communication the family received? Professional Caregiver Tool N = 30 Physician Tool N = 12 Bereaved Family Member Tool N = 17

36. Best Practice 3 DECISION- MAKING

37. Global Rating: Decision Making Overall, how would you rate the care the patient received for decision making? Professional Caregiver Tool N = 16 Physician Tool N = 11 Bereaved Family Member Tool N = 6 Overall, how would you rate the care the family received for decision making? Professional Caregiver Tool N = 25 Physician Tool N = 10 Bereaved Family Member Tool N = 16

38. Best Practice 4 TRADITIONS, CUSTOMS, OR WAY OF LIFE

39. Global Rating: Traditions and Customs Overall, how would you rate the care the patient received for traditions and customs? Professional Caregiver Tool N = 14 Physician Tool N = 4 Bereaved Family Member Tool N = 6 Overall, how would you rate the care the family received for traditions and customs? Professional Caregiver Tool N = 10 Physician Tool N = 4 Bereaved Family Member Tool N = 7

40. Best Practice 5 RELIGIOUS AND/OR SPIRITUAL CARE

41. Global Rating: Religious/Spiritual Care Overall, how would you rate the care the religious and/or spiritual care the patient received? Professional Caregiver Tool N =13 Physician Tool N = 3 Bereaved Family Member Tool N = 8 Overall, how would you rate the care the religious and/or spiritual care the family received? Professional Caregiver Tool N = 13 Physician Tool N = 3 Bereaved Family Member Tool N = 8

42. Best Practice 6 PSYCHOSOCIAL CARE

43. Global Rating: Psychosocial Care Overall, how would you rate the psychosocial care the patient received? Professional Caregiver Tool N = 23 Physician Tool N = 7 Bereaved Family Member Tool N = 9 Overall, how would you rate the care the psychosocial care the family received? Professional Caregiver Tool N = 19 Physician Tool N = 5 Bereaved Family Member Tool N = 11

44. Best Practice 7 LAST HOURS OF LIVING

45. Global Rating: Last Hours of Living Overall, how would you rate the care the patient received during the last hours of living? Professional Caregiver Tool N = 31 Physician Tool N = 9 Bereaved Family Member Tool N = 12 Overall, how would you rate the care the family received during the last hours of living? Professional Caregiver Tool N = 19 Physician Tool N = 7 Bereaved Family Member Tool N = 12

46. Best Practice 8 AFTER THE DEATH

47. Global Rating: After the Death Overall, how would you rate the care the family received after the death?? Physician Tool N = 8 Professional Caregiver Tool N = 23 Bereaved Family Member Tool N = 14

48. OVERALL CARE

49. Global Rating: Overall Care How would you rate the overall End-of-Life Care the patient received in the last 48h of her/his life at BIMC? Professional Caregiver Tool N = 39 Physician Tool N = 18 Bereaved Family Member Tool N = 16 How would you rate the overall End-of-Life Care the family received in the last 48h of her/his life at BIMC? Professional Caregiver Tool N = 34 Physician Tool N = 15 Bereaved Family Member Tool N = 17