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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

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Disclaimer

Dr. Robinson reports no financial

relationship with a commercial interest,

product, or services pertinent to the

content of this educational activity.

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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).

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ACP Truths

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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).

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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

• TurnoverMealer, M., & Moss, M. (2016).

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Community-based ACP initiativeMaking Choices Michigan

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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.

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Pillars for Success

1.Community Engagement strategies

2.Common Advance Directive Document

3.System for Facilitated Conversations

4.GLHC Storage & Retrieval

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Pillar I: Community Engagement: Steering Committee

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ACP Education: “D3”

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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

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Pillar II: Facilitated Conversations

• Community Education – “D3”

Discuss

Decide

Document

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Gundersen Lutheran Respecting Choices® Model

First Steps®

Healthy Adults in community-

MCM

Topics:

Designate Patient Advocate

Clarify values

Next Steps®

Chronic or Life-limiting disease with

complications

Triggered at diagnosis. Focused

on care & txspecific to disease

Last Steps®

Life expectancy

< 12 months

Topics:

DNR, hydration/nutrition. Complete MI-POST

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Volunteers!

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Pillar III: Common AD Documents

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ACP ~ en Español!

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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

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Pillar IIII: Electronic Storage & Retrieval

Virtual

Integrated

Patient

Record

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Making a difference…

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How people describe the ACP process:

• Relieved

• Empowered

• Hard, but necessary

• Increased sense of control

• Educated about hospice & palliative care

• “Easier than I thought”

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Advance Directives in VIPR

YEAR # of RECORDS

2013 143

2014 1484

2015 3378

2016 7939

2017 18503

TOTAL 31447

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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

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“The Conversation” is going to happen…with or without you.

Do you want to be part of it?

Brent

1957 - 2015

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ResourcesHickman, 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, 271275.doi:10.1016/j.apnr.2011.03.003

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), 2192-2193. doi:10.1056/NEJMc1713344

McPherson, A. & Parikh, R.B. (2017). Generations, Journal of the American Society on Aging. Vol 41, 94-101.

Mealer, M., & Moss, M. (2016). Moral distress in ICU nurses [Electronic version]. Intensive Care Medicine, 42, 1615-1617. doi:10.1007/s00134-016-4441-1

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, 1-13. doi:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540332/pdf/nihms714216.pdf