What is Advance Care Planning?

1. What is Advance Care Planning? Advance Care Planning is the process of thinking about, talking about and writing down your health care wishes. Advance Care Planning is the best way to ensure that your wishes are known, understood and respected.

2. The importance of advance care planning • Most people will die while under care of health care professionals after experiencing a chronic or life-threatening illness • Up to 50% of persons will not be able to make their own decisions at the end of life • When patient wishes are unknown, health care professionals typically treat – if it can be done it will be done • Without conversation in advance, family and loved ones may not know a person's wishes

3. Sharing Your WishesTM Give them peace of mind, not tough choices. Plan ahead for your health care

5. Why the Foundation Funded this Project • The Community Health Foundation of Western and Central New York resulted from the merger of Univera with Excellus health plan • The endowment exceeds $100 million • Mission: Improve the health and health care of people and communities of Western and Central New York • Funding Priorities: • Frail Elders • Children in Communities of Poverty • Funding Regions • Eight counties in CNY, Eight counties in WNY

6. Frail elders live out their lives in keeping with their wishes with supportive family and community systems and high quality, appropriate healthcare CHFWCNY Vision for Frail Elders

7. Initial Goals of Project • Improve health-care decision-making for frail elders in order to improve quality of care and quality of life • Strengthen community coalitions with a project that would bring them together around a goal Community Engagement Professional Education System Change

8. Niagara County: Niagara Caregivers Network Onondaga County: Sharing Your Wishes Community Coalition Tompkins County: Health Planning Council of the Human Services Coalition Additional 6 Counties: Cattaraugus, Chautauqua, Orleans, Wyoming Steuben & Schuyler Original 7 Participating Coalitions in Western and Central New York Allegany County: Community Partnership on Aging Cayuga County: Human Services Coalition of Cayuga County Erie County: Coalition for Health Care Decision-Making Genesee County: Long Term Care Task Force

9. Coalition Project • A Shared Learning Adventure • Coalition representatives met for workshops, training, discussion, and sharing several times a year • Each step of the way was supported by the Foundation and included the input of the coalition representatives • Resources were developed to support these communities and to share with other communities interested in improving advance care planning

11. Principles of the SYW Message Step One: Plan ahead for health care needs by starting with thinking about what is important to you Step Two: Select the best person to speak for you if you are unable to speak for yourself Step Three: Talk with this person about your health care wishes Step Four: Formally designate this person as your health care agent

12. SYW Community Tool Kit www.sharingyourwishes.org Summary of the SYW coalition project with brief case scenarios on each of seven county coalitions and highlighting lessons learned • Collection of resources organized for easy use, including:          o media resource binder of materials          o op-ed pieces          o community meeting agendas, invitations, recognition          o facilitator tools, starting the conversation, etc          o surveys and focus group guidelines          o bookmarks, placemats, etc.          o promotional materials for events

13. Sharing SYW Learnings: Genesee County LTC Task Force

14. Importance of Coalition Structure Genesee County Long Term Care Task Force convened in June 2003 Past History of Cooperatively Working on Projects Organized Sub-Committees to Complete SYW Tasks

15. Three Sub-Committees Formed • Heightened Awareness • Facilitation • Systems Development

16. Heightened Awareness Sub-Committee • Community Engagement • Public Education • Senior Group Presentations • One on one visitation to area churches • Media Releases

17. Facilitation Sub-Committee • Facilitation Training Plan • Recruitment • Physicians’ Referral • LTC Agency Buy-In for Facilitation

18. Systems Development Sub-Committee • Integrated all facets of SYW Program • Focus on long term systems change • Primarily attended by decision- makers

19. Broadening the Coalition • Expansion of membership on Sub-Committees • Bringing additional partner agencies on board • Getting the right people at the table

20. Reaching out into the Community Genesee County • Goal: Community Engagement Helping the Community understand what it means to do good Advance Care Planning.

21. Methods: • Senior Group Presentations • One on one visitation to area churches • Health Files • Newsletter Articles and Media Releases

22. Community Presentations • Senior Groups • Church Groups • Community and Civic Organizations • 193 presentations with 2,492 in attendance

23. Finding: • Most people want to talk about advance care planning when given the opportunity and information on understanding their options for sharing their wishes.

24. Finding: • Most people have not spoken with their physician, spiritual advisor, family members or health care agent, often because they find it uncomfortable to begin the discussion; or they believe that others do not want talk about it.

25. One on One Visit to Area Churches • Individually contacted over 50 churches offered presentation to church group provided material on SYW for Bulletin • Encouraged Pastor or Lay Person to be trained as ACP Facilitator • Encouraged Participation on a Sub-Committee • Encouraged Pastor or Lay Person to be trained as ACP Facilitator • Encouraged Participation on a Sub-Committee

26. Health File Distribution • Encourage Use of Health File as Discussion Tool • Presented Health Files to local Medical Society • Health Files Available at 55 Physicians Office • Distributed through local hospital and ambulance service and to senior groups throughout the county • In past year, distributed 10,000 Health Files

27. Newsletter Articles and Media Releases • SYW articles placed monthly in Office for the Aging newsletter for the past 3 years. • Several Daily News newspaper articles to highlight SYW activities • The Morning Show radio talk show • Press Releases on SYW events • Insure that partner agencies are included in media coverage

28. Professional Education Genesee County Professional Education is Key to Sustainability • “Respecting Choices” Facilitation • Basic ACP Facilitation Skill Training • GCC Nursing Program & BOCES LPN Training • NY Connects/Caregiver Counseling/ OFA Case Management

29. “Respecting Choices” Facilitation • Chosen as training program for Certified Advance Care Planning Facilitators Philosophy: Firmly supports consideration of a person’s values and beliefs along with conversation with their family and physician to work hand in hand with a completed and updatedhealth care proxy form. Advance care planning process is so much more than completing a health care proxy form.

30. GCC RN Nursing Program & BOCES LPN Training • Genesee Community College RN Nursing Program adopts Respecting Choices Advanced Care Planning Facilitation program in their core curriculum • 3 GCC Nursing Instructors and 2 United Memorial Medical Center Nurses Trained as Respecting Choices trainers • BOCES LPN Training Course includes Basic ACP Facilitation into curriculum

31. Result: • Nursing Students in • Genesee • Livingston • Orleans • Wyoming GLOW Region becoming well trained in Advanced Care Planning

32. Result: SYW Basic & CertifiedFacilitation Skills Training Completed • 218 Genesee Community College (GCC) RN Students (Certified) • 3 GCC Nursing Program Instructors (Certified) • 72 BOCES LPN Nursing Students (Basic) • 8 Office for the Aging/NY Connects Information & Assistance, Case Management, Assessment and Caregiver Counseling staff (Basic) • 2 Nurses ACP Instructors (Certified) and 10 Nursing staff from the local hospital (Basic) • 6 Caseworker or Nursing staff from County DSS and Health Dept. (Basic)

33. Result: • 5 Nursing/social work staff from local home care/hospice agencies (Basic) • 4 Social workers/admissions coordinators for local nursing home/adult care facilities (Basic) • 8 Pastors or lay leaders in local churches (Basic) • 2 Legal service providers (Basic) • Other representatives of other long term care related agencies (Basic)

34. Systems Change Genesee County • How have we changed the Advanced Care Planning culture by integrating Sharing Your Wishes into the way people do business in Genesee County?

35. Systems Change: Central Registry • Central Registry System • www.sharingyourwishes.org • Free, secure on-line storage of advance directive documents • CHFWCNY led an effort to link to an electronic registry system established by Hospice of Rockland County

36. How the Registry Works • Share copies of advance directives • Send a copy with authorization form to SYW partner • Scanned into registry • Wallet card personal pass code • Providers either register or access individual information using pass code

37. Systems Change: Health Files

38. Systems Change: GCC RN Nursing Program Lifespan Curriculum • Lifespan Curriculum approved by NYS Education Department incorporating Respecting Choices Facilitation Training. • 218 RNs graduated with ACP Facilitation Training • 150 RN students to be trained each year as part of core requirements!

39. OFA/New York Connects • Integration of Advance Care Planning Facilitation into: • NY Connects Information, Screening & Referral • OFA Caregiver Counseling • OFA Case Management & Assessment

40. Evidence of Systems Change:OFA Outcome Measurement • HCP Documents Completed Number of Clients Time FrameAssessedClients w/HCP% w/ HCP 7/05 – 9/05 223 34 15.2% 7/06 – 9/06 204 105 51.4% 10/06 – 3/07 246 136 55.2% 4/07 – 3/08 333 213 63.9%