Quality 101: Palliative Care and the Quality Imperative

1. Quality 101:Palliative Care and the Quality Imperative Diane E. Meier, MD Professor, Departments of Geriatrics and Medicine Gaisman Professor of Medical Ethics Director, Center to Advance Palliative Care Mount Sinai School of Medicine 04.25.07

2. The quality chasm • Medical errors • Risk > benefit • Preventable suffering • Wasted resources • Inequity • Delay • Variability To Err is Human 1999 Crossing the Quality Chasm 2001 Institute of Medicine

3. The solution- improve quality • Pay for performance • CQI • Public reporting

4. Easier said than done: 2nd thoughts • Fonarow GC et al, OPTIMIZE-HF Investigators and Hospitals.Association between performance measures and clinical outcomes for patients hospitalized with heart failure.JAMA. 2007 Jan 3;297(1):61-70. • Bradford D. Winters, MD, PhD; Julius Pham, MD; Peter J. Pronovost, MD, PhD Rapid Response Teams—Walk, Don't Run JAMA. 2006;296:1645-1647. • Rosenthal MB, Frank RG, Li Z, Epstein AM. Early experience with pay-for-performance: from concept to practice. JAMA 2005;294:1788-1793. • Laura A. Petersen, MD, MPH; LeChauncy D. Woodard, MD, MPH; Tracy Urech, BA; Christina Daw, MPH; and Supicha Sookanan, MPHDoes Pay-for-Performance Improve the Quality of Health Care? 15 August 2006 | Volume 145 Issue 4 | Pages 265-272 Annals Internal Medicine • Lindenauer PK, Remus D, Roman S, et al.Public reporting and pay for performance in hospital quality improvement. N Engl J Med 2007;356:486-496. • Epstein AM.Pay for Performance at the Tipping Point.N Engl J Med. 2007 Jan 26; • Werner RM, Bradlow ET. Relationship between Medicare’s Hospital Compare performance measures and mortality rates. JAMA 2006; 296:2694-02. • Horn SD. Performance measures and clinical outcomes. JAMA 2006;296:2731.

5. “For every complex problem, there is a solution that is simple, neat, and wrong.” H. L. Mencken

6. But what is quality? • “I know it when I see it!” • But if patients and families are to have reliably high quality care, there has to be a way to measure it. • How do we measure quality?

7. Dr. M, an 89 year old practicing psychoanalyst • Admitted to the hospital for scleroderma and progressive kidney failure. • Declined hemodialysis. Palliative care consult called to assess patient’s capacity to refuse dialysis and to assure that she was not suicidal. • Discharged home with hospice on day 5 of hospital stay. • Did well at home for 4 months, remained in active clinical practice. • Said good bye to her patients, her son, and her friends, then died quietly at home 3 days later.

8. Dr. M- How does palliative care deliver quality? • She received good hospital palliative care- goals of care assessment and development of a care plan that met her goals, symptom management. • Transitioned effectively to, and received good care from, hospice at home- Meticulous symptom management, psychosocial support from hospice RN, SW, MD + primary doc to patient and her distressed family and friends. Assured a peaceful dignified death at home. Demonstrates how the palliative care quality continuum works well from the perspective of the patient and family, the providers, and the payers. How would you measure and report these outcomes?

9. How Quality is Assessed Degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional standards of care. Evaluated on the basis of3 components: • Structure: (presence of a team) • Process: (patient seen by RN, MD, SW +other members of the team as indicated) • Outcome: (pain and satisfaction improve as a result)

10. The Link Between Structure, Process, and Outcome • Structure and process measures are most useful as quality indicators if changes in them demonstrably improve patient outcomes. • Outcomes are most useful as quality indicators if they can be linked to specific process or structural measures that, if altered, change the outcome.

11. The Purpose of Measurement • External Quality Assessment: Payers, regulators want to selectively pay or accredit providers based on their quality and cost effectiveness. Does this palliative care program assess and treat symptoms in a timely manner? • Internal Quality Assessment: Are we doing the good job we think we are? Is our palliative care team effectively identifying and treating depression?

12. Definition of Quality in Healthcare In healthcare, defined as care that is: • Patient-centered • Beneficial • Timely • Safe • Equitable • Efficient National Quality Forum www.qualityforum.org Institute for Healthcare Improvement www.ihi.org

13. Is Palliative Care Patient and Family-Centered? To answer this question we need to know what persons with serious illness want from our healthcare system.

14. What Do Family Caregivers Want? Study of 475 family members 1-2 years after bereavement • Loved one’s wishes honored • Inclusion in decision processes • Support/assistance at home • Practical help (transportation, medicines, equipment) • Personal care needs (bathing, feeding, toileting) • Honest information • 24/7 access • To be listened to • Privacy • To be remembered and contacted after the death Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics

15. What Do Patients Want? • Freedom from pain • At peace with God • Presence of family • Mentally aware • Treatment choices followed • Finances in order • Feel life was meaningful • Resolve conflicts n=340 seriously illpatients • Die at home Steinhauser et al. JAMA 2000

16. 2. Is Palliative Care Beneficial? Does hospice and palliative care demonstrably improve the experience of serious illness for patients and their families?

17. Are Hospice and Palliative Care Demonstrably Beneficial? The Evidence : • Reduction in symptom burden • Improved patient and family satisfaction • Reduced costs

18. Recent Observational Studies of Hospice: 2003-2007 National Mortality Follow-Back Survey* • Overall quality of care reported higher in hospice compared to hospitals, NH, home health services. • Improved emotional support for decedents and their families Medicare claims data†@ • Survival in hospice patients 29 days longer than non hospice controls for 4493 cancer+CHF pts. • Wives of husbands receiving hospice services prior to death had lower 18 month mortality rates than bereaved wives of men not receiving hospice (4.9% vs 5.4%). Retrospective medical record review‡ • Nursing home residents receiving hospice services significantly more likely to receive pain assessment and opioid therapy in the last 48 hours of life. *Teno et al, JAMA, 2004; †Christakis & Iwashyna, Soc Sci Med, 2003; ‡Miller et al, JPSM, 2003; @Connor et al, JPSM, 2007.

19. Does Hospital Palliative Care Improve Outcomes?Results from Systematic Reviews Compared to conventional care, HPCTs were associated with significant improvements in: • Pain • Non-pain symptoms • Patient/family satisfaction • Hospital length of stay, in-hospital deaths * Jordhay et al Lancet 2000*Higginson et al, JPSM, 2003; †Finlay et al, Ann Oncol 2002; Higginson et al, JPSM 2002.

20. 3. Is palliative care timely?

21. Timing of Referrals to Hospice and Palliative Care is Late • Median length of stay in hospice = 22 days • 35% of hospice patients receive care for < 1 week before death • 9.2% 180 days or more • Median LOS in hospital before palliative care consultation at 1 academic center= 18 days www.nhpco.org and Mount Sinai Hospital Palliative Care Consult Service data

22. Late Referral Decreases Quality • 237 bereaved family members of hospice patients asked about timing of the referral • 13.7% reported referral “too late” • Compared to family members referred early or at the right time, these respondents reported • Lower satisfaction • More unmet needs • Lower confidence • More concerns about coordination Schockett, Teno, Miller, Stuart. JPSM 2005

23. 4. Is Hospice and Palliative Care Safe? • No studies of medical error rate associated with palliative and hospice care • Studies do not show any difference in mortality rate or timing of death between palliative/hospice care patients and usual care groups. • Research needed.

24. 5. Is Hospice and Palliative Care Equitable? • Studies suggest that minorities (African-American, Hispanic-Latino, Asian) less likely to receive palliative + hospice care than whites. • Hospice data: 78% white (vs. 75% U.S.); 8% A-A (vs. 12.3% U.S.); 6% Hispanic (vs. 12.5% U.S.); 2% Asian (vs.3.6% U.S.); 6.4% multiracial. • No ethnic-racial data on hospital palliative care consult services

25. 6. Is Palliative-Hospice Care Efficient?

26. Wall Street Journal page 1Sept. 18, 2003

27. Palliative Care Is Cost-Saving, supports transitions to more appropriate care settings • Palliative care lowers costs (for hospitals and payers) by reducing hospital and ICU length of stay, and direct (such as pharmacy) costs. • Palliative care improves continuity between settings and increases hospice/nursing home referral by supporting appropriate transition management. Lilly et al, Am J Med, 2000; Dowdy et al, Crit Care Med, 1998; Carlson et al, JAMA, 1988; Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; Bruera et al, J Pall Med, 2000; Finn et al, ASCO, 2002; Goldstein et al, Sup Care Cancer, 1996; Advisory Board 2002; Project Safe Conduct 2002, Smeenk et al Pat Educ Couns 2000; Von Gunten JAMA 2002; Schneiderman et al JAMA 2003; Campbell and Guzman, Chest 2003; Smith et al. JPM 2003; Smith, Hillner JCO 2002; www.capc.org; Gilmer et al. Health Affairs 2005. Campbell et al. Ann Int Med.2004; Health Care Advisory Board. The New Medical Enterprise 2004.

28. Total Costs Before and After Palliative Care Consultation at 7 Academic Medical Centers Data: Center to Advance Palliative Care, submitted for publication, 2007

29. Palliative Care Reduces Direct Costs per Day Prior to Death P<.001 for all comparisons in multivariate analyses All adult deaths (>18 years) for calendar years 2002, 2003 LOS 10 - 35 days 30 most frequent DRGs for palliative care patients Palliative Care (N=368) Usual Care (N=1036) Median Day of First Palliative Care Consult

30. Do Palliative and Hospice Care Improve Quality? • Patient-centered? Yes • Beneficial? Yes • Timely? No • Safe? No data • Equitable? No • Efficient? Yes

31. Are we Ready for Prime Time? External Quality Measures for Palliative Care We need measures that are: Valid- The measure correlates with an important outcome. Reliable- The measure is consistent from center to center. Feasible- The burden of measurement is acceptable. Actionable- We can do something about it. Examples: HbA1C, hospice referral rate.

32. Unintended Consequences of Measurement • Burden and expense of measuring outcomes that we may not be able to tell someone how to alter • Results of a poor measure may look as authentic as the results of a good measure • The tyranny of the measurable: Risk of diverting resources to problems being assessed to the detriment of equally or more important problems not being assessed (e.g. measuring # of advance directives instead of occurrence of care consistent with patient goals) • “There are lies, damned lies, and statistics.” Mark Twain

33. External quality measures and palliative care - Are we ready for prime time? We providers should not measure nor be held accountable for: a) outcomes that have not been shown to be alterable by processes under our control (eg hospitals and pain levels) b) processes that have not been shown to improve outcomes (eg PSA measurement; fecal occult blood testing, BSE)

34. External Quality Measures A Good Example- Restraint Use • Studies demonstrate that restraints do not prevent falls. • Use of restraints associated with incontinence, injury, depression, discomfort, pain, and death. • Restraint use and falls selected as quality indicator for minimum data set (MDS)

35. External Quality Measures - Restraints • Reduction in restraint use in nursing homes. • No resulting increase in falls or injuries.

36. External Quality Measure A Bad Example- Weight Loss • Malnutrition and weight loss result in increased morbidity and mortality in the elderly • Nursing home residents are at increased risk for malnutrition and dehydration • Weight loss selected as quality indicator for minimum data set (MDS)

37. Unintended Consequences - Weight Loss in the Nursing Home • Dying patients lose weight. • Broad application of wt. loss as a quality indicator caused: • Increased use of feeding tubes • Increased transfers to hospital • Poorly selected measure results in worsened quality of care.

38. Steps Forward and Challenges How should we respond to pressures of regulatory bodies and payers for measures given the current state of research in our field?

39. Palliative Care Quality Collectively our field must develop and test measures that are feasible, reliable, actionable, and demonstrably linked to improved quality, or have bad measures imposed upon us.

40. Achieving Quality of Care • Patients and families want palliative care. • We believe that palliative care improves quality. • Payers want to purchase quality palliative care for their beneficiaries. • We have to prove our quality through internal and external measurement and reporting. • The time to figure out which measures correlate with quality is now.

41. Dr. M’s Care- the Result of Hospital, Palliative Care, & Hospice Partnership As a result of an effective partnership between a hospital palliative care program and a community hospice provider, Dr. M. received care that was: • Patient centered- her goals were defined and met • Beneficial- symptoms managed, family supported • Safe- no complications, injuries, errors • Timely- palliative care from time of diagnosis of end stage renal disease til death and bereavement • Efficient- avoided unwanted dialysis, hospitalizations, surgical procedures, imaging, transport and $$$cost.

42. Resources • National Quality Forum: A National Framework and Preferred Practices for Palliative and Hospice Care Quality 2006 38 preferred practices www.qualityforum.orgwww.nationalconsensusproject.org Examples • Structures: Presence of an interdisciplinary team; 24/7 coverage; trained and credentialed staff. • Processes: Measure and document pain and other symptoms using a scale; conduct family conferences to address goals of care. • Outcomes: Availability of advance directives across settings; document designated surrogate; manage symptoms in a timely, effective (acceptable to patient/family), safe manner.

43. ACOVE Quality Measures IF…, THEN…, BECAUSE… format • IF a vulnerable elder had dyspnea in the last 7 days of life and had an expected death, THEN the chart should document how the dyspnea was treated and its follow up, BECAUSE dyspnea can be effectively treated • IF a vulnerable elder has a dx of severe dementia, is hospitalized and survives 48 hrs, THEN within 48 hrs of admission the chart should document that the patient’s prior preference for care have been considered or that these preferences are unknown, BECAUSE patient values and preferences should guide life-sustaining care. Based on observational studies and expert opinion. Wenger NS, Rosenfeld K. Quality indicators for end of life care in vulnerable elders. Ann Int Med 2001; 135:677-685.

44. RAND Karl Lorenz • http://www.ahrq.gov/downloads/pub/evidence/pdf/eolcare/eolcare.pdf • Shugarman LR, Lorenz K, Lynn J. End-of-Life Care: An Agenda for Policy Improvement, Clinics in Geriatric Medicine, Vol. 21, No. 1, Feb 2005, pp. 255-272.