1. Sharing Your Wishes ™ Enhanced Pre-Need Planning Helping Families with Health Care Directives © 2008. Human Services Coalition of Tompkins County. All rights reserved. Give Them Peace of Mind, Not Tough Choices

2. Sharing Your Wishes How Advance Care Planning provides Peace of Mind For Older Clients and their Families Finger Lakes Funeral Directors Association May 8, 2008, Ithaca, New York Presentation by:  Lisa Kendall, Family and Children’s Services, Home Care Program, Caregiver Counseling and Respite Services, Ithaca, NY  Beverly Hammons, SYW Coordinator Supported by the Human Services Coalition of Tompkins County, Ithaca, New York

3. Overview Why Advance Directives are necessary Various legal documents and statutory requirements Sharing Your Wishes Planning Guide Advance Directives as a part of Pre-need Planning Services Note: Advance Health Care Planning is also referred to as Advance Care Planning (ACP).

4. Why advance care planning is important: Most people will die while under the care of health professionals after experiencing a chronic or life-threatening illness. Up to 50% of persons cannot make their own decisions when they are near death. Health professionals typically treat when uncertain of a patient’s wishes. Without discussion, loved ones have a significant chance of not knowing a person’s views. ©GLMF, Gundersen Lutheran Medical Foundation

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

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

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

8. Do they really need a document? Isn’t just talking enough? Won’t the doctors just ask my closest relative?

10. Current Practice Hospitals, nursing homes, home care agencies and other providers are mandated to ask if a patient has a health care proxy. Doctors discuss with certain patients. Hospicare and Palliative Care Services may require advance directives. American Hospital Association site:www.putitinwriting.org

11. Choices??? How the Majority of Americans Die How the Majority of Americans Wish to Die Over 75% 80% Patricia Bomba, M.D. Vice President & Medical Director, Geriatrics, Lifetime HealthCare Companies

12. Advance Health Care Planning “A process of assisting individuals in understanding, reflecting and discussing preferences for future medical care, including end-of-life decisions.” The Advance Directive is the legal document. It is only one step in the ACP process.

13. Different Roles People involved include Different professionals have different roles in helping individuals with advance care planning. Anyone who works with seniors…………. IndividualNurses Office for the Aging Doctors Funeral Directors Faith Leaders Lawyers* Home Care *Note that an attorney is not needed to complete Advance Directive documents

14. Capacity A clinical term recognized by law The ability of a patient to make informed decisions as determined by clinical assessment *GLMF

15. Four Steps to Advance Health Care Planning (contained in the SYW Planning Guide) 1) Think about what’s important to you. 2) Select an “agent” to speak for you. 3) Talk about your wishes. 4) Put your choices in writing using the New York State Health Care Proxy form.

16. Individual Values and Beliefs SYW encourages people to speak with: Health Care Agent Family Spiritual Advisor PhysicianAbout Their Values Personal beliefs Spiritual beliefs Hopes and wishes What makes life worth living? What really matters?

17. True or False? Advance Directives may be in the form of a personal letter…

18. Types of Advance Directives Legal in New York State Health Care Proxy Form (most common) Do Not Resuscitate forms a. in-hospital/nursing home b. out-of-hospital MOLST (Medical Orders for Life-Sustaining Treatment) not widely used Clear and Convincing Evidence (a judge would decide) Living will formPhysician’s note Personal letter Other evidence

19. Common misperceptions Senior counselor: “Some people think that being the health care proxy leads to the money. They confuse living will with a will for distributing assets. Some health care proxies ask for financial information because they think that being the HCP entitles them to it.”

20. Clarifying Confusing Language Will Power of attorney Legal guardian Living will Power of attorney for health care Health care agent, proxy, or representative Death proxy

21. Recent NYS Form Appointment of Agent to Control the Disposition of Remains (Section 4201 of the NYS Public Health Law) We are suggesting that people check with their funeral director for more information.

22. Basic Standards for Communication Written plans are best. Recommend the document that best meets the needs of the individual. Strive for clarity, accuracy and completeness. ©GLMF, Gundersen Lutheran Medical Foundation

23. Nutrition and Hydration – Need to specify on form People MUST indicate on the form that they have discussed their wishes about artificial nutrition and hydration with their agent. If this is not documented, the agent cannot decide for the individual and artificial methods (tubes, etc.) are likely to be used. The form in the SYW Planning Guide already has this printed on it; people can cross this out if they prefer.

24. "Won't doctors just do what the family wants?"

26. Signatures for Health Care Proxy Individual must sign and date the form. Two witnesses must also sign and date. Witnesses must be 18 or over Cannot be a physician who is treating the patient (unless the physician is a relative.) Cannot be the person who is appointed as agent

27. Practical Issues: Accessibility Keep a copy Provide a copy to:  Health Care Agent  Alternate Agent, if designated  Family members / loved ones  Primary care physician  Other health care providers  Primary hospital  Faith leader / spiritual advisor

28. Hospital admissions coordinator: “If it falls apart at the last moment because you can’t find the form, all the planning doesn’t matter. If the paper is not there when needed, lawsuits are possible either way.”

29. On-line Registry for advance directives In New York State some counties are participating in this free, secure, on-line program; check to see if your county participates. AssuringYourWishes.org

30. Storage by Hospitals Some hospitals provide electronic storage of records; check with your local institutions. In Tompkins County: Cayuga Medical Center at Ithaca Scans forms into electronic medical record (Even if not a CMC patient)

31. Review and Update Periodically Major life events Newly diagnosed chronic illness Advancing chronic illness After complicated life- sustaining treatments If agent no longer available to make decisions

32. Update - continued To ensure continued accuracy If you move – every state recognizes some form of advance directive though terminology may differ from state to state. When wishes change You can always alter your proxy and living will documents at any time.

33. Funeral Directors can help!

34. Hospices For more info and to find the Hospice nearest you: Hospice and Palliative Care Association of New York State www.hpcanys.org Tompkins County: Hospicare and Palliative Care Services 607-272-0212 www.hospicare.org

35. Online Resources www.agingwithdignity.org Five Wishes www.compassionandsupport.org www.putitinwriting.org American Hospital Assoc. www.nhpco.org National Hospice and Palliative Care Organization (Many focus on just end-of-life care, rather than the longer last-phase-of-life care).

36. Legal perspective NYS Attorney General Guide www.oag.state.ny.us/health/health_care.html American Bar Association Consumer’s Tool Kit www.abanet.org/aging/toolkit/home.html

37. Other States? For state-specific documents, go to www.caringinfo.org Maintained by Caring Connections, a program of the National Hospice and Palliative Care Organization

38. Sharing Your Wishes™ The Community Health Foundation of Western and Central New York has an EXCELLENT website: www.sharingyourwishes.org It includes: Downloadable materials for clients (Planning Guide, Information Booklet, Note Card for Agent) SYW Toolkit for organizations interested in promoting advance health care planning in their community.

39. Sharing Your Wishes™ Give them Peace of Mind, not Tough Choices. Copyright, 2008. Human Services Coalition of Tompkins County, Inc. All rights reserved. 100 W. Seneca Street, Ithaca, NY 14850 (607) 273-8686 www.hsctc.org info@hsctc.org

40. The People Behind the Package Educators Lisa Kendall, LCSW, CSW-G, Family and Children’s Services, Home Care Program, Caregiver Counseling and Respite Services, Ithaca, NY Marilyn Kinner, BS, Ithaca College Gerontology Institute Christine Klotz, MHA, Community Health Foundation of Western and Central NY Tom DeLoughry, EdD, Niagara Caregivers Network, Health Association of Niagara County, Inc, NY Human Services Coalition staff Betty Falcão, MPH, Director, Health Planning Council Beverly Hammons, MPS, SYW Coordinator Instructional Media Developer David M. Coleman, MyOnlineLearning.com, Owner