Begin with the End in Mind: Community-Based Advance Care Planning as a Gateway to Palliative Care

Transcription

1 Begin with the End in Mind: Community-Based Advance Care Planning as a Gateway to Palliative Care Carol F. Robinson DNP, MS, BSN, RN, CHPN Community Coordinator 1

2 Disclaimer Dr. Robinson reports no financial relationship with a commercial interest, product, or services pertinent to the content of this educational activity. 2

3 ACP Myths A DNR tattoo is as good as an Advance Directive (AD) An AD is treated the same as a DNR Only old, frail or sick people need an AD My doctor/family already knows what I want. The process is one and done. You will no longer receive healthcare. Insurance companies want you to go through ACP to save them money. Healthcare providers understand ACP The conversation will be depressing Holt, G. E., Sarmento, B., Kett, D., & Goodman, K. W. (2017). 3

4 ACP Truths 4

5 Situational Analysis While there has been significant growth in personal Advance Care Planning since 1990, a 2014 HHS study indicates that just 26.3% of Americans have an Advance Directive Several barriers persist in establishing clear communication of personal preferences for end-of-life care: Reluctance to discuss death and dying Fragmented healthcare delivery system Inopportune timing in the midst of crisis Inadequate structural support for Advance Care Planning Rao, J. K., Anderson, L. A., Lin, F., & Laux, J. P. (2014). 5

6 Lack of Planning: Unintended consequences Making rushed, crucial decisions on one of the worst days of your life Affected by confusion, fear, pain Families, Patient Advocates Decisional Conflict leading to anxiety, depression and post-traumatic stress disorder Hickman, R. L., Daly, B. J., & Lee, E. (2012). Fractured families Healthcare Providers Moral Distress Turnover Mealer, M., & Moss, M. (2016). 6

7 Community-based ACP initiative Making Choices Michigan 7

8 Making Choices Michigan Community-based, 501 (c)(3); wholly-owned subsidiary of Great Lakes Health Connect Goal: Move the ACP conversation from the healthcare environment to the community-at-large Vision: foster a community culture where it is acceptable to talk about health care choices, including end of life, and to respect and honor those choices. Mission: encourage and facilitate advance health care planning by the people of West Michigan. 8

9 Pillars for Success 1. Community Engagement strategies 2. Common Advance Directive Document 3. System for Facilitated Conversations 4.GLHC Storage & Retrieval 9

10 Pillar I: Community Engagement: Steering Committee 10

11 ACP Education: D3 11

12 Education venues PUBLIC Faith Groups Senior Continuing Education Residential/Assisted Senior Living African American Health Assoc. Health Fairs Public Radio & Television PROFESSIONAL Elder Law / Advocacy Medical Bioethics Committees Nursing Societies Domestic Crisis Agencies Academic Institutions Hospice Volunteer Groups 12

13 Pillar II: Facilitated Conversations Community Education D3 Discuss Decide Document 13

14 Gundersen Lutheran Respecting Choices Model First Steps Next Steps Last Steps Healthy Adults in community- MCM Chronic or Lifelimiting disease with complications Life expectancy < 12 months Topics: Designate Patient Advocate Clarify values Triggered at diagnosis. Focused on care & tx specific to disease Topics: DNR, hydration/nutrition. Complete MI-POST 14

15 Volunteers! 15

16 Pillar III: Common AD Documents 16

17 ACP ~ en Español! 17

18 Pillar IIII: Electronic Storage & Retrieval Premier Health Information Exchange in Michigan 129 Hospitals = 85% of Acute Beds 4,000 Connected Participants (Physical, Behavioral, Social) 9.5 Million Unique Patients in Community Health Record + 1 BILLION Message Transactions each year 18

19 Pillar IIII: Electronic Storage & Retrieval Virtual Integrated Patient Record 19

20 Making a difference 20

21 How people describe the ACP process: Relieved Empowered Hard, but necessary Increased sense of control Educated about hospice & palliative care Easier than I thought 21

22 Advance Directives in VIPR YEAR # of RECORDS TOTAL

23 Grand Rapids, MI ~ Best Place to die in America Policy and Politics to Drive Change in End-of-Life Care: Assessing the Best and Worst Places to Die in America. McPherson, A. & Parikh, R.B. (2017). Generations Most people want to die at home, but many land in hospitals getting unwanted care. McPherson, A. & Parikh, R.B. (2017). The Washington Post 23

24 The Conversation is going to happen with or without you. Do you want to be part of it? Brent

25 Resources Hickman, R. L., Daly, B. J., & Lee, E. (2012). Decisional conflict and regret: Consequences of surrogate decision making for the chronically critically ill. Applied Nursing Research, 25, doi: /j.apnr Holt, G. E., Sarmento, B., Kett, D., & Goodman, K. W. An unconscious patient with a DNR tattoo [Letter to the editor]. The New England Journal of Medicine, 377(22), doi: /nejmc McPherson, A. & Parikh, R.B. (2017). Generations, Journal of the American Society on Aging. Vol 41, Mealer, M., & Moss, M. (2016). Moral distress in ICU nurses [Electronic version]. Intensive Care Medicine, 42, doi: /s Rao, J. K., Anderson, L. A., Lin, F., & Laux, J. P. (2014). Completion of advance directives among U.S. consumers. American Journal of Preventive Medicine, 46, doi: 16.pdf 25