Advance Care Planning… is there a future? Sandy Schellinger, RN MSN NP-C LifeCourse Co-Principle Investigator Allina Center for Healthcare Research & Innovation Respecting Choices First and Next Steps National Faculty Honoring Choices Minnesota July 19, 2012

Causes of Death in Minnesota (117 people per day) “Unexpected” Deaths 2 Heart Disease 23% Cancer 24% Lung Disease 9% Stroke 6% Diabetes 3% Other 20% Trauma 10% Sudden Death 3% Acute Stroke 2%

Causes of Death in Minnesota “Expected Deaths” 100 people every day 3 Heart Disease 23% Cancer 24% Lung Disease 9% Stroke 6% Diabetes 3% Other 20%

The Future of ACP Depends on How we Address some Key Questions: Will we adopt a common definition of ACP? How will ACP be delivered in a consistent and reliable way to every person in need? How will a written plan be created that is person- centered and individualized? What is the role of leaders in creating and sustaining an ACP initiative? How will research assist with dissemination of ACP?

Defining ACP: Current World ACP is interchanged with Advance Directives (Ads) Focus is still on completing Ads despite evidence of their ineffectiveness Selected proxies are unprepared Written plans are vague or ambiguous; don’t guide clinical decision making

ACP IS UNIVERSALLY DEFINED Future World….

End of Life Care Dilemma

diagnosis TIME death Low Burden of illness High adaptation

Advance Care Planning… Is Not A “One Size Fits All” Discussion Must Be Individualized To Patient Readiness And Stage Of Health

diagnosis TIME death Low Burden of illness High adaptation

The Life Course of Advance Care Planning Basic ACP group sessions Basic HCD completion ID Health care agent Clarify goals values Treatment wishes in the face of neurological injury DSACP session Facilitator, patient, proxy Individualized HCD 90 minute session Discuss goals of care & complication results in “bad” outcome. POLST: Provider Orders for Life Sustaining Treatment Hospice/LTC patients Medical order set with specific goals and wishes Time Function Healthy adults age 65 Adults any age with progressive advanced illness complications Adults any age who you would not be surprised they died in the next 6-12 months.

Advance Care Planning Is a process of communication Separate and distinct activity from the creation of a written plan (e.g., advance directive) Is a service offered to individuals by qualified individuals

The Goals of Advance Care Planning To assist individuals to take control of their future healthcare decisions To make informed decisions based on their current stage of health, goals, values (religious and cultural) and beliefs To prepare substitute decision makers for a future decision making role To communicate this plan to those who need to know To provide care consistent with the plan

THE DELIVERY OF A CONSISTENT AND RELIABLE ACP SERVICE The Future World

The Components of an ACP Service ACP conversations are standard routine care ACP is initiated by healthcare providers and others at appropriately staged ACP is individualized (person-centered) ACP is delivered by trained individuals ACP is delivered by a team people with varying roles and responsibilities.

The Role of the ACP Facilitator: Current Disagreement on who should be doing ACP Lack of understanding on what the facilitation service should be Lack of standards in delivering a consistent and reliable standard Lack of time and reimbursement Lack of standardized training

The Emerging Role of the ACP Facilitator A new healthcare role Standardized training and certification Roles and responsibilities defined A care coordinator type of role Part of a team Reimbursed for services

The Advance Directive Document: Current World Focus on a legal form Rigid reliance on contents of written document Restrictive language Format does not promote dialogue Promotes false sense of security May be a barrier for discussion Evidence shows not effective

PLANS WILL BE FLEXIBLE The Future World

AD Document: Future World Creation of less restrictive forms Plans will become more specific as people get sicker Plans will be accessible

LEADERSHIP WILL SUSTAIN ACP INITIATIVES The Future World

Leadership Matters: Future World Leaders integrate ACP into the strategic mission “it may not be a good business model, but it’s the right thing to do”…CME/CEO Dedicate resources to sustain an ACP program Committed ongoing quality improvement

Local Initiatives RARE --- –Readmission reduction ACO --- –Pioneer Accountable Care Organizations Medical Home Care Choice –PIP Grant 25

Allina LifeCourse

Kaiser Permanente of Northern California “Our goal is for Life Care planning to become a routine part of care within Kaiser Permanente Northern California, for all our adult members across the continuum of care”

C-TAC: Coalition to Transform Advanced Care 30

Agency for Integrated Care: Singapore

Advance Care Planning and End of Life Care 32

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Future World… Will you be the change to sustain a World-Wide Imperative?

Questions?