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1. Application of Medical Orders for Life-Sustaining Treatment (MOLST) for Care Transitions:Community-wide Implementation of the MOLST Program Patricia Bomba, M.D., F.A.C.P. Vice President and Medical Director, Geriatrics Chair, MOLST Statewide Implementation Team Leader, Community-wide End-of-life/Palliative Care Initiative Chair, National Healthcare Decisions Day New York State Coalition Patricia.Bomba@lifethc.com CompassionAndSupport.org February 2011 A nonprofit independent licensee of the BlueCross BlueShield Association

3. Objectives • Recognize the value of MOLST as an End-of-life Care Transitions Program and the importance of shared provider responsibility for community-wide implementation • Define the relationship of MOLST & FHCDA • Outline the key components, challenges, and lessons learned from successful community implementation of the MOLST program • Identify community implementation steps for the MOLST Program, including • System implementation • Professional education – Advance Care Planning facilitators • Community education • Review resources on CompassionAndSupport.org, including Advance Care Planning Clinical Pathways

4. Needs Assessment and Evolving RealitiesHonoring Patient Preferences for EOLC • Life expectancy has increased • Increased prevalence of chronic diseases • Death in America often seen as “optional” • Planning for the future is not just for the old, disabled or chronically ill • Gaps in care and quality issues • location of death, pain management, treatment preferences and hospice admissions • Regional Variations in Site of Death • Regional Variations in Cost of Care at EOL • Healthcare Professional Communication Skills • Functional Health Illiteracy Community-Wide End-of-life/Palliative Care Initiative, 2001

5. Needs Assessment: End-of-Life Data • Majority of seriously or terminally ill patients lack advance directives. * • Advance Care Planning improving in Upstate NY ** • 90% of individuals think it is important • 42% of individuals 18 years and older have a health care proxy • 86% of Americans believe that people with terminal illness would prefer to receive end-of-life care at home. *** • Almost 1/3 of Americans die in a hospital, and 20% die in an intensive care unit. **** • NYS has highest rate in U.S. of inpatient days during the last 6 months of life – 15.5 days per deceased patient. ***** *Kass-Bartelmes, BL, et al., AHRQ, 2003 **End-of-Life Care Survey of Upstate New Yorkers: Advance Care Planning Values and Actions, Excellus BlueCross BlueShield, April 2008 ***2002 Harris Survey on End-of-Life Care ****Angus, DC, et al., Critical Care Medicine, 2004 *****Dartmouth Atlas on Health Care

6. Needs Assessment: Improve Shared, Informed Medical Decision-Making About End-of-Life Care • Majority of patients with advanced illness have high information needs concerning prognosis and life expectancy. * • Studies document patients’ misunderstandings about their prognosis and options. ** *Haggerty, et al, J. Clin Oncol 2005; Hancock, et al., Palliative Medicine, 2007 **Tattersall, et al., Support Care Cancer, 2002; **Weeks, et al., JAMA,1998,Braddock, et al., JAMA, 1999

7. Why MOLST? • MOLST is a process not just a form. • Transitions with the patient across settings. • Only vehicle for non-hospital DNI in NYS. • Provides specific actionable orders. • “Encouraging additional POLST (Physician Orders for Life-Sustaining Treatment) efforts that translate chronic care patient’s care goals into easily identifiable, portable and renewable medical orders that follow the patient across settings would go a long way toward enhancing advance care planning in this country.” * * Advance Directives and Advance Care Planning: Report to Congress, U.S. Dept. of Health and Human Services, Aug. 2008

9. Recent MOLST Developments • Streamlined Form (can be used in All settings) • Eliminated Supplemental Forms • Aligns with Family Health Care Decisions Act • General instructions and checklists assist providers in complying with legal requirements for Adult Patients and Minor Patients • http://www.nyhealth.gov/professionals/patients/patient_rights/molst/ • MOLST Chart Documentation Forms • http://www.compassionandsupport.org/index.php/for_professionals/molst/checklists_for_adult_patients • http://www.compassionandsupport.org/index.php/for_professionals/molst/checklist_for_minor_patients • OPWDD checklist • http://www.omr.state.ny.us/health/hp_MOLST.jsp

10. FHCDA and MOLST • FHCDA surrogates may make any health care decision for patients in hospitals or nursing homes who: • Lack medical decision-making capacity; and • Do not have a health care agent. • FHCDA surrogates may make DNR/DNI decisions for patients in the community, who lack medical decision-making capacity and do not have a health care agent. Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

11. FHCDA Surrogates • Patient’s guardian authorized to decide about health care pursuant to Mental Hygiene Law Article 81 • Patient’s spouse, if not legally separated from the patient, or the domestic partner • Patient’s son or daughter, age 18 or older • Patient’s parent • Patient’s brother or sister, age 18 or older • Patient’s actively involved close friend, age 18 or older Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

12. FHCDA and MOLST • Capacity Determinations: • FHCDA surrogate: Physician and health or social services practitioner; or • 2 physicians (1 must be psychiatrist) for patients with mental illness • Physician and psychologist or physician with specified experience in treating developmental disabilities • Health care agent: 2 physicians or • 2 physicians (1 must be psychiatrist) for patients with mental illness • Physician and psychologist or physician with specified experience in treating developmental disabilities Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

13. Life-Sustaining Treatment Rules: Standards for FHCDA Surrogates • Consistent with patient's wishes, including religious and moral beliefs; or • If patient's wishes not reasonably known and cannot be ascertained, in accordance with the patient's best interests. • Includes consideration of: • the dignity and uniqueness of every person; • the possibility and extent of preserving the patient's life; • the preservation, improvement or restoration of the patient's health or functioning; • the relief of the patient's suffering; and • any medical condition and such other concerns and values as a reasonable person in the patient's circumstances would wish to consider. Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

14. Life Sustaining Treatment Rules: Standards for Physicians • 2 physicians concur: • Treatment would be an extraordinary burden; and • The patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided; or • the patient is permanently unconscious; OR • Treatment would involve such pain, suffering or burden, that it would reasonably be deemed inhumane or extraordinarily burdensome; and patient has an irreversible or incurable condition Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

15. FHCDA Special requirements based on “irreversible or incurable condition” • Hospitals: Withdrawing or withholding artificial nutrition and hydration in a hospital over the attending physician’s objection: • If the attending physician objects to the order, the ethics review committee (including a physician who is not directly responsible for the patient’s care) or an appropriate court must determine that the medical order meets the required standards • Nursing homes: For LST orders other than DNR orders: • The ethics review committee, (including at least one physician who is not directly responsible for the patient's care) or an appropriate court must determine that the orders meet the required standards. Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

16. FHCDA Selected Non-Hospital Rules • Patient, surrogate, health care agent may consent to DNR or, with a MOLST form, DNR & DNI. • For patients who lack capacity, LST orders other than DNR/DNI require clear and convincing evidence is required (Checklist #5). • Upon inter-institutional transfer or admission from community, orders are effective unless physician examines patient and cancels orders, after making reasonable efforts to notify person who consented. Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

17. FHCDA Special Non-Hospital Rule for Minors • For MOLST orders other than a DNR order: • In the community, as in a nursing home, an ethics review committee, (including at least one physician who is not directly responsible for the patient's care) or an appropriate court must determine that the orders meet the required standards. Family Health Care Decisions Act, Laws of New York, Chapter 8. Effective June 1, 2010

18. System Implementation Across All Care Settings

19. MOLST: EOL Care Transitions Program Hospital Office LTC A Project of the Community-Wide End-of-life/Palliative Care Initiative

20. MOLST: EOL Care Transitions Program • Created by the Community-wide End-of Life/Palliative Care Initiative • To provide a single, common document that would function as an actionable medical order in all care settings in the community • To transition with a patient through all health care settings • Intended that the form will be transported with the patient between different health care settings in order that their wishes for life-sustaining treatment and CPR will be clearly indicated and followed A Project of the Community-Wide End-of-life/Palliative Care Initiative

21. Lessons Learned: Community Initiative • Development and implementation of the Community-wide EOL/Palliative Care Initiative (A healthcare and community collaborative) • Define vision, mission, values • Employ results-oriented approach • Design effective, inclusive coalition membership • Create effective leadership • Demonstrate strong commitment to purpose • Monitor performance http://www.compassionandsupport.org/index.php/about_us

22. Advance Care Planning Community Outcomes: Advance Directives and MOLST • Traditional Advance Directives Outcomes • Every adult (18 and older) will complete a Health Care Proxy • Every adult will have meaningful discussions about end-of-life • Every adult will have access to an easily recognizable document • Every adult will have access to educational sessions • MOLST Short Term Outcomes • Consistent uniform application of the Medical Orders for Life-Sustaining Treatment (MOLST) program. • Successful MOLST Community Pilot and adoption of a MOLST as a statewide program. • Expanded cadre of volunteers prepared to engage in one-to-one and community conversations regarding end-of-life issues, options and the value of advance directives, including the MOLST form. • MOLST Long Term Outcomes • Informed & prudent use of life-sustaining & intensive care services. • Greater efficiencies in health care delivery. • Improved patient and family satisfaction. • Reduction in costs associated with medical liability and defensive medicine by providing physicians an efficient framework for discussing end-of-life options. Community-Wide End-of-life/Palliative Care Initiative, 2001

23. Advance Care Planning Community Goals: National Quality Forum • Document the designated agent (surrogate decision maker) in a Health Care Proxy for every patient in primary, acute and long-term care and in palliative and hospice care. • Document the patient/surrogate preferences for goals of care, treatment options, and setting of care at first assessment and at frequent intervals as condition changes. • Convert the patient treatment goals into medical orders and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and hospital, i.e., the Medical Orders for Life-Sustaining Treatment—MOLST, a POLST Paradigm Program. • Make advance directives and surrogacy designations available across care settings; through collaboration with the RHIO. • Develop and promote healthcare and community collaborations to promote advance care planning and completion of advance directives for all individuals. e.g. Respecting Choices and Community Conversations on Compassionate Care. National Quality Forum, Framework and Preferred Practices for Quality Palliative Care & Hospice Care, 2006, Adapted for New York State

24. History of MOLST Program • Work initiated Fall 2001 • Created November 2003 • Adapted from Oregon’s POLST • Combines DNR, DNI, and other LST • Incorporates NYS law • Collaboration with NYSDOH – 3/04 • Revised 10/05 • Approved Inpatient DNR form • Legislation passed 2005 • Community Pilot launched • Chapter Amendment 2006 • Gov Paterson signed bill 7/8/08 • MOLST consistent with PHL§2977(3) • Permanent change in EMS scope of practice, 7/08 • MOLST permanent and statewide • DOH-5003 NYSDOH MOLST form, 6/10 • FHCDA, effective June 1, 2010

25. MOLST Program Dissemination Systems Integration • NYS Healthcare Facilities • Community Education • Care Management Partnerships • 39 county service region • Collaborators • EPEC Faculty & Attendees • Trained ACP Facilitators • MOLST Trainers • Regional EOL Coalitions • NYSDOH, OPWDD, OMH • SEMAC/SEMSCO • MOLST Statewide Implementation Team • NHDD NYS Coalition

26. Challenges to Community Implementation • Families not ready to have discussions • Physicians not prepared to have discussions • Physicians expect NP, PA, SW, RN to have conversation without MD input • Similar to DNR issues • No identified Health Care Agent or Surrogate • No available finances for guardianship • Language with unintended consequences • Cultural barriers • Functional health illiteracy MOLST Community Pilot 2004-2008

27. Lessons Learned: MOLST • Buy-in by the institution or provider office helps • Integrate MOLST into AD/DNR Policy and Procedure • Clarify role of MD, NP/PA, SW • Physician accountability for medical orders • Supportive role of other health care professionals helps • MOLST physician and systems champion in facility and community practice • “Build it once. Use it multiple times.” • Commit to data driven QI process • Share data in MOLST Updates & Community Forums MOLST Community Pilot 2004-2008

28. Lessons Learned: Core Working Group • Assemble a workgroup • Educate and empower • Research - evidence base • NQF Preferred Practices • Web resources: CompassionAndSupport.org • Broad representation – interdisciplinary • Leadership, passion, commitment • Willing to outreach and educate • Sustainability • Expand collaboration: MOLST Trainers MOLST Community Pilot 2004-2008

29. Lessons Learned:Task Force – Collaborative Model • Broad representation • Local Department of Health • EMS • Hospitals • Long-term Care Facilities: SNF, ALF • Hospice and Home Care Agencies • County Office for Aging • Ombudsmen • Medical Society • Bar Association MOLST Community Pilot 2004-2008

30. Lessons Learned: MOLST Program Initiation • Establish multidisciplinary team • Engage physician and system champions • Develop implementation plan • Template at MOLST Training Center • MOLST LTC Implementation Process • Interviews on MOLST video Honoring Patient Preferences • Develop educational training plan • Template at MOLST Training Center • Educational Plan for Advance Directives and MOLST MOLST Community Pilot 2004-2008

31. Lesson Learned: EMS Key to Success • Work in tandem with EMS • Identify an EMS champion • Recognize how EMS works and the regulations that bind them • Limitations of the NYSDOH non-hospital DNR form vs. MOLST • Collaborate with EMS medical directors and EMS educators • Actively listen to colleagues’ concerns MOLST Community Pilot 2004-2008

32. Lessons Learned: Program Coordination • Leadership essential • Operations: CompassionAndSupport.org • distribution and fulfillment of educational resources • training • quality improvement • share best practices & lessons learned • Funding • Sustainability MOLST Community Pilot 2004-2008

33. Professional Education and Training

34. MOLST Professional Education and TrainingTwo-Step Approach to Advance Care Planning • Advance Care Planning Facilitators • Community Conversations on Compassionate Care Program • MOLST Program • Goal-based, patient-centered discussions • Patient-centered program and process • Educational resources on CompassionAndSupport.org • Program Implementation • Facility: hospital, long term care, home care, hospice • Physician practice – opportunity for process improvement • Community education • CCCC, MOLST, reliable information on web site A Project of the Community-Wide End-of-life/Palliative Care Initiative

35. Advance Care Planning Compassion, Support and Education along the Continuum Advancing chronic illness Multiple co-morbidities, with increasing frailty Chronic disease or functional decline Healthy and independent Maintain & maximize health and independence Death with dignity

36. Traditional ADs For All Adults Community Conversations on Compassionate Care (CCCC) New York Health Care Proxy Living Will Organ Donation State-specific forms Actionable Medical Orders For Those Who Are Seriously Ill or Near the End of Their Lives Medical Orders for Life-Sustaining Treatment (MOLST) Program Do Not Resuscitate (DNR) Order Medical Orders for Life Sustaining Treatment (MOLST) Physician Orders for Life Sustaining Treatment (POLST) Paradigm Advance Directives CompassionAndSupport.orgCaringInfo.org CompassionAndSupport.org POLST.org

37. Community Conversations on Compassionate CareFive Easy Steps • Learn about advance directives • NYS Health Care Proxy • NYS Living Will • Advance Directives from Other States • Remove barriers • Motivate yourself • View CCCC videos • Complete your Health Care Proxy and Living Will • Have a conversation with your family • Choose the right Health Care Agent • Discuss what is important to you • Understand life-sustaining treatment • Share copies of your directives • Review and Update A Project of the Community-Wide End-of-life/Palliative Care Initiative

38. Medical Orders for Life-Sustaining Treatment(MOLST Program), A POLST Paradigm Program • Improve the quality of care people receive at the end of life • effective communication of patient wishes • documentation of medical orders on a brightly colored pink form • promise by health care professionals to honor these wishes • Complements the use of traditional advance directives A Project of the Community-Wide End-of-life/Palliative Care Initiative

39. MOLST: Who Should Have One? • Generally for patients with serious health conditions • Wants to avoid or receive any or all life-sustaining treatment • Resides in a long-term care facility or requires long-term care services • Might die within the next year

40. Framework for the Conversation8-Step MOLST Protocol* 1. Prepare for discussion • Understand the patient and family • Understand the patient’s condition and prognosis • Retrieve completed Advance Care Directives • Determine “Agent” (Spokesperson) or responsible party 2.Determine what the patient and family know • re: condition, prognosis 3. Explore goals, hopes and expectations 4. Suggest realistic goals 5. Respond empathetically 6. Use MOLST to guide choices and have patient/family share wishes • Shared medical decision-making • Conflict resolution 7. Complete and sign MOLST 8. Review and revise periodically *Developed for NYS MOLST, Bomba, 2005

41. Shared, Informed Medical Decision Making • Will treatment make a difference? • Do burdens of treatment outweigh benefits? • Is there hope of recovery? • If so, what will life be like afterward? • What does the patient value? • What is the goal of care?

42. MOLST Discussion: Role of Qualified, Trained Health Care Professionals • The MOLST form must be completed based on the patient’s current medical condition, values, and wishes. • Completion of the MOLST begins with a conversation or a series of conversations between the patient, the health care agent or the surrogate, and a qualified, trained health care professional that defines the patient’s goals for care, reviews possible treatment options on the entire MOLST form, and ensures shared, informed medical decision-making. • The conversation should be documented in the medical record. http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

43. MOLST Discussion: Identify core patient values and beliefs • Ask the patient: • "What makes life worth living?" • "What really matters to the person?" • Examples of responses: • Participation in meaningful relationships • Not to be a burden to loved ones • Avoidance of severe discomfort • Relief of suffering • Improvement or maintenance of quality of life • Maintenance of personhood • Achieve a good death • Support for families and loved ones • Other personal values and beliefs http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

44. MOLST Discussion: Goals for Care • The degree to which the patient is meeting their core values generally determines their goal for care that in turn guides the patient's choice of treatments. • Broad categories of goals for care include: • Longevity: “Do what is necessary to keep me alive.” • Functional preservation: “I am currently meeting my core values. However if a condition occurs in which I am not likely to recover to meet my core values, I would not want treatments to extend my life and request a change to focus on comfort care.” • Comfort care: “I am currently not meeting my core values and have a poor quality of life. Focus solely on my comfort. Longevity at this point may increase my suffering.” http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

45. MOLST Discussion: Physician Accountability and Professionalism • Although the conversation(s) about goals and treatment options may be initiated by any qualified and trained health care professional, a licensed physician must always, at a minimum: • Confer with the patient and/or the patient’s health care agent or surrogate about the patient’s diagnosis, prognosis, goals for care, treatment preferences, and consent by the appropriate decision-maker • Sign the orders derived from that discussion. http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

46. MOLST Instructions and Checklists • Checklist #1 - Adult patients with medical decision-making capacity (any setting) • Checklist #2 - Adult patients without medical decision-making capacity who have a health care proxy (any setting) • Checklist #3 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy, and decision-maker is a Public Health Law Surrogate (surrogate selected from the surrogate list) • Checklist #4 - Adult hospital or nursing home patients without medical decision-making capacity who do nothave a health care proxy ora Public Health Law Surrogate • Checklist #5 - Adult patients without medical decision-making capacity who do not have a health care proxy, and the MOLST form is being completed in the community. • Checklist for Minor Patients - (any setting) • Checklist for Developmentally Disabled who lack capacity – (any setting) must travel with the patient’s MOLST http://www.nyhealth.gov/professionals/patients/patient_rights/molst/

47. MOLST Discussion: Document the conversation • Briefly summarize pertinent content of the discussion and document core patient values and/or goals for care. • MOLST Chart Documentation Forms align with the NYSDOH Legal Requirements Checklists for Adult Patients and were developed as tools to document the MOLST discussion and help providers comply with documentation requirements under FHCDA.  • Compliance with documentation requirements will ensure providers in facilities; especially nursing homes meet legal requirements and prevent deficiencies with NYSDOH survey. http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

48. MOLST Chart Documentation Forms Align with NYSDOH Checklists

49. MOLST System Education and TrainingTwo-Step Approach to Advance Care Planning • All Staff: Use CCCC, MOLST videos and website • recognize value of CCCC/MOLST via patient stories • Obtain standardized educational materials from CompassionAndSupport.org • Medical and Dental Staff • mail educational materials to each provider • present at various business meetings • publish article in provider newsletter • educational materials available at different units • encourage use of on-line MOLST training • special attention: ER, hospitalists, residents, fellows, medical students

50. MOLST System Education and Training Two-Step Approach to Advance Care Planning • Nursing • present at various meetings • present on each unit • send in-service packet as resource to each unit • establish Advance Directive liaisons as resource • one for each nursing unit • attend educational program • meet monthly • Social Work / Care Managers • present at standing meetings • Unit Clerks • recognize value of MOLST via patient stories on video • integrate into discharge planning processes