MA Expert Panel in End of Life Care Presentation to Quality and Cost Council March 16, 2010

1. MA Expert Panel in End of Life CarePresentation to Quality and Cost CouncilMarch 16, 2010 Chair: Lachlan Forrow Vice-Chairs: James Conway, Dominique Kim

2. Outline • Origins, Charge, and Members • Overall Framing of Work • Processes • Key Findings and Draft Recommendations • Next Steps • Open Questions

3. Statewide Quality and Cost GoalsMA Quality and Cost Council Goal I: Reduce the annual rise in health care costs Goal II. Ensure patient safety and effectiveness of care. Goal III. Improve screening for and management of chronic illnesses in the community. Goal IV. Develop and provide useful measurements of or approaches to quality in areas of health care for which current data are inadequate or current approaches are unsuccessful. Goal V. Eliminate racial and ethnic disparities in health and in access to and utilization of health care; health indicators will be consistent, and consistently improving, across all racial and ethnic groups.  Goal VI. Promote quality improvement through transparency. http://www.mass.gov/Ihqcc/docs/annual_report.pdf

4. Statewide Quality and Cost Goals Goal IV. • Develop and provide useful measurements of health care quality in areas of health care for which current data are inadequate. • FY 2008 Specific Goal • Develop processes and measures to improve adherence to patients’ wishes in providing care at the end of life. Ensure that health care providers ask about and follow patients’ wishes with respect to invasive treatments, do not resuscitate orders, hospice and palliative care, and other treatments at the end of life.

5. Chapter 305 of the Acts of 2008AN ACT TO PROMOTE COST CONTAINMENT, TRANSPARENCY ANDEFFICIENCY IN THE DELIVERY OF QUALITY HEALTH CARE. SECTION 41.  Notwithstanding any general or special law to the contrary, the executive office of health and human services, in consultation with the health care quality and cost council, commission on end-of-life care established by section 480 of chapter 159 of the Acts of 2000, and the Betsy Lehman Center for Patient Safety and the Reduction of Medical Errors, shall convene an expert panel on end-of-life care for patients with serious chronic illnesses…. The panel shall identify best practices for end-of-life care, including those that minimize disparities in care delivery and variations in practice or spending among geographic regions and hospitals, and shall present recommendations for any legislative, regulatory, or other policy changes necessary to implement its recommendations.

6. Panel Members

7. Panel Members (cont’d)

8. Panel Members (cont’d)

9. Panel Processes • Panel convened • Four full-panel meetings: Spring through Fall 2009 a. Review of national and state status of the field b. Division into “Work Groups” and coordinating “Core Group” 3. Continued work on analyses and recommendations via email, in-person meetings, teleconferences 4. Hiring of professional writer to assist 5. Interim reports to Secretary, QCC subcommittees 6. Presentation (today) to full QCC 7. Finalization of Recommendations and Release of Report

10. Ground Our Efforts and Built on the Expert Work of Others: NPP/NQF

11. NPP/NQF: Four Imperatives The Partners will work together to ensure that: 1. All patients with life­limiting illnesses will have access to effective treatment for relief of suffering from symptoms such as pain, shortness of breath, weight loss, weakness, nausea, serious bowel problems, delirium, and depression. 2. All patients with life­limiting illnesses and their families will have access to help with psychological, social, and spiritual needs. 3. All patients with life­limiting illnesses will receive effective communication from healthcare professionals about their options for treatment; realistic information about their prognosis; timely, clear, and honest answers to their questions; advance directives; and a commitment not to abandon them regardless of their choices over the course of their illness. 4. All patients with life­limiting illnesses will receive high­quality palliative care and hospice services.

12. Sample Key Findings • ~140 people die each day in the Commonwealth, with many hundreds of family members and other loved ones affected daily • 70% of people in the Commonwealth want to die at home (AARP); the opposite is true today: ~70% die in institutions • For many common diseases (eg CHF), death is often not predictable even 1-2 weeks in advance • We thus cannot improve EoL care by focusing on the identifiably “dying” – must address the trajectory of serious advancing, ultimately-fatal illness • Advance care planning (e.g. MOLST) is essential, has been too often stymied by “It’s too early until it’s too late” • Continued evidence of inadequate pain/symptom control (e.g. up to 45% of MA nursing home residents report “persistent pain”) • Major variations in resource utilization with no evidence of being based on patient wishes (Dartmouth Atlas; MA data) • Same even for interventions with widely-variable and often intensely-felt patient preferences (e.g. feeding tubes)

13. Charge to Work Groups • Focus on a limited number of highest-priority areas …most crucial for achieving transformational change in end-of-life care in the Commonwealth. • All recommendations must be maximally evidence-based: • Has what is recommended been tried elsewhere? • If so, what were the results: if successful, why? if not, why not? • Recommendations should focus on creating or changing either structures or processes through which excellence in end-of-life care for all residents of the Commonwealth will be reliably achieved. • “Structures”: e.g. presence of a palliative care service in institutions, or existence of hospice facilities or contracts. • “Processes”: e.g. requirements that end of life issues be addressed (advance care planning, offering of palliative care consultation), or standards for communication/coordination across settings of care. • Possible mechanisms for change: policy, regulation, legislation, development/dissemination of best practices, etc. • All recommendations must be clearly (1) Actionable; (2) Achievable; (3) Measurable; (4) Equitable; and (5) Cost-Effective.

14. Our Overall Framework: Embracing Complexity and Comprehensiveness…

15. A Central Key Finding • There is little or no accountability for any aspect of ensuring that the care of patients with serious, advancing illness is anchored in the patient’s informed wishes (i.e. with understanding of full range of medically-accepted alternatives): • Eliciting those wishes (helping patients formulate them) • Documenting wishes • Ensuring that wishes are available to decision-makers, including across transitions in care • Honoring those wishes For example, we found no evidence that the wide variations in Massachusetts hospital care described in the next two slides are related to differences by hospital in patients’ informed wishes.

16. Large Variation in ICU Use Among HospitalsPercent of EOL Patients ≥ Age 80 with Any ICU Days, FY2006 Massachusetts Division of Health Care Finance and Policy

17. MA Hospital Feeding Tube Placementin Patients with Advanced Dementiarate/100 hospitalizations 2000-2007 Source: Teno J, Mitchell S, et. al. Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive ImpairmentJAMA. 2010;303(6):544-550and http://ltcfocus.org/Upload/intubation.pdf

18. The 2 Crucial Determinants of Change • Engage people (for EoL care, every one of us is ultimately a patient and family member and payer) in voicing, individually and collectively, what we want and need during serious advancing illness, through the end of life • Hold health care providers publicly accountable for delivering that (and sharing best practices to drive ongoing improvement)

19. Draft Recommendations 5 categories: • Massachusetts residents understand the full range of their options for care when faced with a serious advancing medical condition, and know how to ensure that health care providers understand and will respect their wishes. • Health careproviders/systems reliably (a) identify the wishes and needs of all patients with serious advancing illness, and (b) meet them, through the end of life. • A skilled workforce (knowledgeable, competent, and compassionate)is available to meet patients’ and families’ end-of-life care needs. • Financial systems support provision of the care that patients want and need • A responsible body with existing credibility has the resources and authority to ensure achievement of these requirements for excellence in end-of-life care, with measurable quality indicators and public accountability

20. Category 1: Massachusetts residents understand the full range of their options for care when faced with a serious advancing medical condition, and know how to ensure that health care providers understand and will respect their wishes. Recommendation: 1. The Commonwealth should launch by Fall 2010 a vigorous, high-visibility, and ongoing public awareness campaign about advance care planning, in accordance with Massachusetts Acts of 2008, Chapter 305, Section 42, with two goals: A. Foster statewide understanding of the importance of advance care planning in ways that are synergistic with evolving MOLST activities B. Mobilize and empower patients, their families, and other stakeholders to demand and drive improvements in end-of-life care As part of this campaign, (1) the Massachusetts Department of Public Health and Executive Office of Elder Affairs should organize stakeholders in Massachusetts to celebrate National Health Care Decisions Day (NHDD) annually on April 16; and (2) full MOLST statewide roll-out should be achieved no later than 2014. Measure: Annual Reports of QCC should include campaign achievements (health care and other organizations participating; their activities; web tracking of MOLST form downloading/use; etc.)

21. Category 2:Health careproviders/systems reliably (a) identify the wishes and needs of all patients with serious advancing illness, and (b) meet them, through the end of life. Recommendations: 1. All health care organizations (hospitals, nursing homes, others) involved in caring for patients with serious advancing illness should be required to document that they (a) have protocols for systematic identification of patients in possible need of palliative or hospice care, with mechanisms for referral to appropriate caregivers [by ?date]; and (b) demonstrate that these protocols are being systematically used [by ?date]. 2. All health care organizations involved in caring for patients with serious advancing illness should be required to document that they have palliative care services that are readily available to patients with identified needs, or have contracts with licensed, certified hospice or other palliative care services [by ?date] Measures: Annual Reports of QCC should document fulfillment of these requirements. Evidence of fulfillment may include: existence of protocols and palliative care services; numbers/percent of patients identified/screened; numbers referred to palliative care services; numbers referred to hospice.

22. Category 2:Health careproviders/systems reliably (a) identify the wishes and needs of all patients with serious advancing illness, and (b) meet them, through the end of life. Recommendations (cont’d): 3. Implementation of the Commonwealth’s Strategic Plan for Care Transitions should include explicit steps to ensure that transferred patients with identified palliative or hospice care needs experience seamless, high-quality care across settings that understands and respects their wishes, such as those expressed through MOLST forms 4. At least one health plan within Massachusetts should develop [?by date] a demonstration program for ensuring expanded and comprehensive palliative care and hospice services for patients with serious advancing illness, with the eventual goal that all private and public health plans in the Commonwealth in Massachusetts will provide these. Measures: Annual Report on Strategic Plan for Care Transitions explicitly addresses patients with palliative or hospice care needs. Annual Report of QCC includes status of health plan demonstration program(s) and assessment/recommendations of steps needed to support those. 22

23. Category 3:A skilled workforce (knowledgeable, competent, and compassionate)is available to meet patients’ and families’ end-of-life care needs. Recommendation: 1. All health care organizations caring for patients with serious advancing illness should be required [?by date] to document that those caring for these patients have training and support commensurate with their roles and responsibilities, including: • Family members and other personal caregivers, who provide the majority of hands-on care and support for patients, especially for patients at home; • Direct care workers, includingPatient Care Assistants (PCA), Certified Nursing Assistants (CNA), Hospice and Home Health Aides (HHA), and others who provide bedside care to patients in hospitals, nursing homes, assisted living residences, hospices, and home; • Behavioral health professionals such as social workers and chaplains, who provide emotional and spiritual support to patients and families; and • Physicians, nurses, and other advance practice clinicians, including both generalist clinicians and certified palliative care specialists Measure: Documentation to be included in each organization’s description of the palliative care services available to its patients (see Recommendation #2 under Category 2 above)

24. Category 3:A skilled workforce (knowledgeable, competent, and compassionate)is available to meet patients’ and families’ end-of-life care needs. Recommendations (cont’d): 2. The Commonwealth should actively promote increased palliative care training of health care professionals by: a. Requiring [?by date] all [?just public or ?all] medical schools, nursing schools, and social work programs in the Commonwealth to include basic competencies in generalist palliative care within their undergraduate and graduate curricula. b. Asking [?requiring; ?by date] organizations representing the disciplines of Personal Care Assistants (PCAs), Certified Nursing Assistants (CNAs), and Home Health Aides (HHAs) to require at least one to two hours of education in palliative care out of the 12 hours of annual continuing education. c. Asking the MA Office of Emergency Medical Services (OEMS) to review the role and training of EMS staff and first responders related to end-of-life care and standards should be developed related to end-of-life care. d. Encouraging local/state chapters of organizations of the key professional disciplines—medicine, nursing, social work, physician assistants—to (a) participate in developing and offering training programs in palliative care for continuing education and other professional development, and (b) work with their respective national organizations and to ensure that basic palliative care competencies be included in curricula, training, and certification requirements for graduate and undergraduate education, as appropriate for their fields. Measure: a.: Documentation by schools of their curricula, including evaluation of the achievement of specified competencies; b./c./d.: status of these to be included in Annual Reports of QCC 24

25. Category 4:Financial systems support provision of the care that patients want and need Recommendation [in evolution]: Any Commonwealth payment reform initiative should be designed to ensure that, for all patients with serious advancing illness: • Discussions with their physician about their goals and wishes for care, including at the end of life, are included as covered services • Comprehensive palliative care and hospice services, delivered by an interdisciplinary team, are appropriately covered, without time limitation • No patient is forced to renounce all life-prolonging measures in order to receive the quality-of-life benefits of hospice or palliative care services • No burdensome medical interventions are paid for without adequate documentation that the intervention is based on the informed wishes of the patient, including understanding of palliative care and hospice alternatives

26. Category 5: A responsible body has the resources and authority to ensure achievement of these requirements for excellence in end-of-life care, with measurable quality indicators and public accountability Recommendations [in evolution]: QCC-related entities whose work relates to the care of patients with serious advancing illness (such as the Strategic Plan for Care Transitions) should: review the Recommendations of the Expert Panel on End-of-Life Care and determine how these recommendations can be implemented as part of their evolving work; and b. set annual goals related to implementing the recommendations, and other efforts to improve end-of-life care, and report to the QCC on progress 26

27. Aligning Council Goals and Work

28. Category 5: A responsible body has the resources and authority to ensure achievement of these requirements for excellence in end-of-life care, with measurable quality indicators and public accountability Recommendations [in evolution] Cont’d: 2. The QCC should ensure that a responsible body, such as a reinvigorated Massachusetts Commission on End of Life Care, has the resources and authority to promote implementation of these Recommendations. This body should: • include representatives of the four areas addressed in the Panel’s report: informed and empowered patients and families; an effective health care system; a competent and compassionate workforce; and financial systems that support care; • Oversee the Commonwealth’s public awareness campaign surrounding end of life care in accordance with Chapter 305, Acts of 2008. • Support implementation of the MA MOLST Program, Chapter 305, Acts of 2008, including full statewide roll-out by 2014. • Develop and implement additional strategies that improve end-of-life care in the Commonwealth, including among special populations such as people with disabilities or mental illness, children, frail elders, racial and ethnic minority groups, and veterans; and • Report annually to the legislature on progress implementing these recommendations and other efforts, as part of the QCC Annual Report.

29. Next Steps • Integration of QCC comments today into evolving draft of Final Report • Review with Work Group Co-Chairs (March 22) • Revised draft of Final Report • Full Expert Panel meeting (April) • Release of Report Parallel work ongoing on communication strategies to engage stakeholders and the public leading up to the release and beyond.

30. Open Issues 1. Role of QCC/members/committees in finalizing recommendations 2. Collaboration with other states • Best practices • Measures, benchmarks 3. Engagement of public (individuals and civic organizations) in ensuring effective change begins to happen 4. Communication strategy for final report

31. Thank You