Sharing Your Wishes: Promoting Conversations about Advanced Care Planning

1. Sharing Your Wishes: Promoting Conversations about Advanced Care Planning ICGI Conference, 9/22/2005 Betty Falcão Marilyn Kinner Lisa Kendall

2. We can’t respect your choices for future medical care…… unless we know what they are. Gundersen/Lutheran, Wisconsin

3. Sharing Your Wishes Community Health Foundation of Western and Central New York $70,000 for 2-years - Increase our community capacity for Advance Care Planning - Encourage and support older adults in actually doing ACP

4. Leadership Long Term Care Committee Health Planning Council, Human Services Coalition of Tompkins County Staff: Betty Falcão, Director, HPC Beverly Hammons, SYW Program Assistant, HPC

5. SYW Partners - initial Cayuga Medical Center at Ithaca County Office for the Aging Family & Children’s Service, Home Health Care Program Finger Lakes Independence Center Health Department of Tompkins County Hospicare and Palliative Care Services Ithaca College Gerontology Institute Lifelong Long Term Care Services

6. Our approach Personal Stories Public Stories People’s Preferences Patterns of Serious Illness

7. If you were terminally ill, where do you think you would want to die?Tompkins County Preferred (2001) and Actual (1999-2003)

8. Patterns of Serious Illness Most of us will die after experiencing a chronic life threatening illness; less than 10% will die suddenly. Not just care at the end of your life, but health care decisions in the last-phase-of-life.

9. Cancer High “Cancer” Trajectory, Diagnosis to Death Possible hospice enrollment Function Low Death -- Often a few years, but decline usually < 2 months Time Onset of incurable cancer 15% of deaths Joanne Lynne, The Washington Home, Center for Palliative Care Studies

10. High (mostly heart and lung failure) Organ System Failure Trajectory Function Low Death ~2-5 years, but death usually seems “sudden” Begin to use hospital often, self-care becomes difficult Time 20% of deaths

11. High Dementia/Frailty Trajectory Function Low Death Time Quite variable - up to 6-8 years Onset could be deficits in ADL, speech, ambulation Over 50% of deaths

12. Imagine If….Our Vision • A majority of frail elders in Tompkins County knew what kind of last-phase-of-life care they wanted. • Were able to talk about this with their family members and medical providers. • Had their wishes clearly expressed in a legal document. • The document was accessible and used to direct and improve their medical care and quality of life during their last years.

13. An Advance Directive is…. a plan indicating preferences for future health care decisions if a person is unable to make them for him/herself

14. From Advance Directives to Advance Care Planning • A cultural change will be required • Organization & community effort • Involvement of multiple professionals • Commitment to learning new skills and practices

15. Current Education of Health Professionals about ACP • Focused on completion of advance directives • No developed system to practice or work • No defined responsibilities or competencies • Inadequate or conflicting teaching resources • Little or no management or review of practice • ©GLMF

16. Advance Care Planning • “A process of assisting individuals in understanding, reflecting and discussing preferences for future medical care, including end-of-life decisions.” • Skilled, trained facilitators working as an interprofessional team

17. Advance Care Planning (ACP)A process that includes: • Understanding • Reflecting • Discussing • Formulating a plan • ©GLMF

18. Advance Care PlanningA process that takes into account: • The person’s current health status • Values and goals • Sense of what is most important to live well • ©GLMF

19. Advance Care Planning is successful when: • Future options are understood • Options are considered in light of the person’s values and goals • Choices are discussed • A plan is formulated and supported • Surrogates and loved ones accept that following the plan is a loving act • ©GLMF

20. Advance Care Planning may include: • Who would make decisions • Clarification of the surrogate’s authority • How decisions might be made • Why decisions should be make • When medical treatment should be continued or forgone • What it would mean to live well • ©GLMF

21. Making Choices:Decisions should be guided by: • Determining the person’s goals…both medical and non-medical • Considering the benefits and burdens for the person of particular options or choices • ©GLMF

22. Barriers to ACP • Avoidance of the subject • Lack of professional skill, training, and confidence • Perceived lack of time • Lack of reimbursement • Belief it is not possible • ©GLMF

23. Advance Care Planning: Training Facilitators

24. WHO AND HOW • Community Volunteers • Organizational Staff • Full day or two half days of training • Prerequisite reading

25. TRAINING FORMAT • Lecture • Video • Discussion and story telling • Small group problem solving • Role play • Competency review

26. TRAINING CONTENT • Understanding the language, concepts and tools. • An overview of law, medicine and ethics. • Communicating the plan.

27. TRAINING CONTENT Continued • Decision making capacity • Introducing the ACP concept • Eliciting the person’s perspective • Strengthening the Healthcare Surrogate

28. TRAINING CONTENT CONTINUED • Discussions with different groups of adults • Living Well • Problem solving scenarios • Facilitation role play • Creating the document

29. Sharing Your WishesComponents * Training * Partner Organizations * Materials * Community Change

30. Referral Organizations • Medical Providers • Faith Community • Estate Planners (Legal and Financial) • Senior Groups • Employers • Human Service Agencies • Others

31. Referral Advocate Orgs • Family & Children's Service • Health Department of TC • Long Term Care Services • Others…….

32. Facilitating Orgs Cayuga Medical Center at Ithaca County Office for the Aging Finger Lakes Independence Center Hospicare and Palliative Care Services Lifelong Others………SNF’s

33. Central Registry Cayuga Medical Center at Ithaca Scanned into medical record Paper file for non-patients “Medical Safe Deposit box” Share with health care proxy, other family members, medical providers, perhaps attorney……. And also talk

34. Community Health Foundation • Grant funds • Materials • Training for coalition leaders • Measurement tools • Publicity materials and training • List serve to share among 6 coalitions • Other initiatives (Quality Improvement and Health Leadership) www.chfwcny.org

35. Foundation Materials • Planning Guide –includes NYS proxy form and wallet card • Informational Booklet (longer) • Card for health care proxy • Poster

36. CHFWCNY - Six Coalitions Give them peace of mind – not tough choices

37. Materials • NYS Dept. of Health, required • Excellus • NYS Attorney General • Respecting Choices • Five Wishes • National Hospice Association • Conversations before the Crisis • Others Long Term Care Committee reviewed

38. Online Resources • www.agingwithdignity.org Five Wishes • www.excellusbcbs.com • www.lastactspartnership.org • www.putitinwriting.org Am. Hosp. Assoc. • www.nhpco.org Hospice • www.oag.state.ny.us/health/health_care.html NYS Attorney General ***

39. Other States? National Hospice and Palliative Care Organization Go to www.nhpco.org, click on What's New, scroll down and click on End of Life Care: Advance Care Planning.

40. Promoting Conversations Talking about your wishes • With your proxy • With your parents • With your children

41. Making a difference? • Agency partners • Staff and levels of training • Amount of materials distributed • Conversations with clients/patients • One-on-one facilitation meetings • Health care proxies in the Central Registry

42. Improved Outcomes? • Earlier referrals to Hospicare • Admits to the ICU already have proxy • Discussions between individuals and proxy • Increased satisfaction of health care decisions • Less stress for agency staff • Higher percentage of place of deaths following people’s preferences

43. What do you think? • What is already happening in your community? • How might your agency promote improved advance care planning? • Which community groups/employers might be interested in materials?