Promoting Community-Wide Awareness and Engagement in

Advance Care Planning Rebecca Gruszkos, LCSW, ACHP-SWACP Project Educator, Bon Secours

Objectives

• Identify limitations of the current approach to advance directives

• Identify opportunities Honoring Choices® Virginia provides to promote community-wide ACP

• Understand the role of an advance care planning facilitator

• Identify key components of First Steps® ACP

“Researchers find that the mortality rate holds steady at 100%.”

The Onion News Network

Who should do ACP?

Any adult, with decision making capacity…

Regardless of age…

Or health status

THE PATIENT SELF DETERMINATION ACT (1991)

Federal law requiring all health care organizations receiving Medicare or Medicaid funds to do the following:

•Inform patients of their right to accept or refuse health care using written information.•Ask patients if they have advance directives or would like information on advance directives.•Document that patient has an advance directive.•Cannot discriminate against patients who do not choose to have an advance directive.

ELEMENTS OF ADVANCE DIRECTIVES

•Appointment of surrogate decision-makers (aka “Agents”): Specific naming of an individual(s) to make decisions and implement patient wishes if the patient is incapacitated.•Healthcare Instructions: Written statement on preferences for end of life treatment usually addressing restrictions on undesired life-sustaining interventions.•Additional directives: Organ donation, donation for research/anatomical study, mental health care provisions, provisions for pregnancy

THE “UNDERACHIEVING” ADVANCE DIRECTIVE: WEAKNESSES•Underutilized- 47% of adults > 40 (Dying in America report, IOM, 2013) •Many forms are vague, lack specificity, or unclear •Challenges with storage, access, and retrieval of documents•Appointed surrogate may or may not truly understand the preferences of the patient (or even know they are the agent!)•Despite legal backing, may be ignored or overridden•Health care providers lack understanding, time, skill and/or uncomfortable with EOL discussions

Advance Care PlanningCurrent State Ideal State

Focus on right to refuse treatment Focus on thoughtful preplanning conversations

Once form is complete, process is considered finished.

Asking about existing documents as a baseline/starting place for conversations, not an end point

Commonly, provide a form for the patient to complete independently

Majority of assistance is focused on ACP engagement and guided conversation

If completing advance directive form with patient, not validating agent’s acceptance or understanding of role

Ensuring agent’s acceptance of role and ability to honor pt’s wishes even if not in agreement with those wishes AND documenting this in ACP note/Advance Directive

Our Local Setting

• Richmond VA – diverse in race & ethnicity, and socio-economics, ~ 1 million residents

• Health systems – Bon Secours– HCA – Virginia Commonwealth University (VCU Health)– McGuire VAMC

• Richmond Academy of Medicine

To what degree have you thought about your own future healthcare wishes?

1 - Haven't thought about it at all

2

3

4

5 - Have thought about it a lot

0% 20% 40% 60% 80% 100%

10%

7%

18%

16%

50%

Q6. To what degree have you thought about your own future healthcare wishes?

66%

n = 600

How Important Is It To Discuss Your Future Healthcare Wishes with Family or Loved Ones?

1 - Not at all im-portant

2

3

4

5 - Very important

0% 20% 40% 60% 80% 100%

5%

2%

8%

15%

70%

Q7. In your opinion, how important is it to discuss your future healthcare wishes with your family or loved ones?

85%

n = 600

To what extent have you discussed your future healthcare wishes?

A few comments about your wishes.

A brief conversation about your wishes.

A good exchange of ideas about your wishes.

A careful and complete review of your wishes.

0% 20% 40% 60% 80% 100%

12%

26%

24%

35%

Q12. To what extent have you discussed your future healthcare wishes?

n = 534

Level of readiness to complete a document that outlines your future healthcare wishes

Unsure

I see no need to complete this document.

I see the need to complete this document but I am hesitant to do so.

I am ready to complete such a document or have already started.

I already completed such a document but it needs to be reviewed or changed.

I already completed such a document and it reflects my wishes.

0% 20% 40% 60% 80% 100%

6%

14%

29%

16%

7%

29%

Q16. Please select the answer that best describes your level of readiness to complete a document that outlines your future healthcare wishes.

n = 600

Who did we look to for Help?

• Gundersen Health System, LaCrosse, WI. Created new ACP model focused on Conversations, not solely the completion of forms.

• 20 year success with ACP model: Respecting Choices®

• 96% of Population has written AMD

• Now nationally and internationally renowned—”Gold Standard” model

Advance Care Planning

“Advance Care Planning is an organized process of communication to help individuals understand, reflect upon, and discuss goals for future healthcare decisions in the context of their values and beliefs. When done well, it has the power to produce a written plan (i.e. an AD) that accurately represents the individual’s preferences and thoroughly prepares others to make healthcare decisions consistent with those preferences.”

Bud Hammes, Respecting Choices

First Steps® ACP Key Components

• Assess motivation for / understanding of ACP• Thoughtfully choosing a healthcare agent AND

validate agent’s understanding to / commitment to role. (Include agent in conversation!)

• Identifying cultural, religious, spiritual, or personal beliefs that might influence treatment decisions

• Exploring goals of care for a severe, permanent brain injury and a poor cognitive outcome

Bringing competitors together for community-wide advance care

planning: Bon Secours, HCA, VCU

The 5 promises from the 3 health systems

• We will initiate the conversation• We will provide assistance with Advance Care

Planning• We will make sure plans are clear• We will maintain and retrieve plans• We will appropriately follow plans

The five promises are the work product of Respecting Choices©

Funding

• Each health system made 2-year commitment• Richmond Academy of Medicine funds• Foundations• Grants• First two years: $370,000+– Respecting Choices© materials and training– Community-wide survey

• Health systems also committed FTE(s) as coordinators and for facilitators to be trained and do the facilitated conversations

Implementation sites

• Primary care / family medicine offices

• Palliative medicine clinic• Hematology-Oncology

clinic• Radiation Oncology

clinic• Infusion center

• Inpatient and outpatient rehab units/clinics

• All employees at a hospital

• A whole hospital• Parkinson’s center• Complex care clinics• House Calls program

Mostly ambulatory. All sites are operated by the three health systems, not independent / private practices.

Kick-Off: January 2015

Process Measures

In the first six months of HCV

A B C TotalAvg per system

# of people invited 177 275 388 840 280

# scheduled an appointment 91 113 116 320 107

% scheduled 51% 41% 30% 38%

# refused (to schedule) appointment at time of invitation

73 109 201 383 128

% refused 41% 40% 52% 46%

Goal: Greater than 50% of people invited to participate in Honoring Choices facilitation will agree to schedule an appointment with a facilitator.

A B C Total Avg per system

# of people who participate in one or more facilitated Honoring Choices conversations

51 106 103 260 87

% invited who have participated 29% 39% 27% 31%

# of people who complete a written plan

24 94 42 160 53

% with conversations who completed written plan

47% 89% 41% 62%

In the first six months of HCV

Goal: Greater than 50% of people who participate in an Honoring Choices facilitated discussion will complete a written plan.

A B C Total Avg per system

# of documented Honoring Choices discussions in medical records

47 104 94 245 82

% documented 92% 98% 91% 94%

In the first six months of HCV

Goal: 100% of people who complete an Honoring Choices discussion will have this discussion documented.

What Else did we do?

• Media Campaign: Print, TV• Racial/Ethnic Disparities: Direct Community

Engagement--Libraries, Churches, other venues (care “without walls”)

• Socioeconomic Disparities: ACP at no cost• Group Model vs individual invitation: <20

participants. Sign up for private session • AMD: Honoring Choices® Cover Sheet

Lessons learned

We learned… Question for you…

People in part-time roles were soon dealing with full-time responsibilities

Is your institution committing appropriate FTEs?

Not knowing what settings are best until you try them Can you tolerate mixed results?

Some people trained as facilitators left their positions

Are you prepared to train more facilitators than you think you need?

Physician support drives referrals; physician resistance prevents referrals

Are you prepared to invest time and effort to get & maintain physician support?

More lessons learned

We learned… Question for you…

With health system-sponsored efforts, this needs to be a long-term priority of executives

Are your leaders aware of the upfront efforts needed to produce results in the long term?

Outcomes may take years to generate

Are your stakeholders in this for the long haul?

Front-line folks can be overwhelmed by measurement tasks

Are you balancing your measurement demands with other duties and priorities?

Community engagement takes a lot of field work

Who are your partners in the community?

EMR challenges within and across providers and settings

Is this on your radar screen?

Nurses as Facilitators

Key to our Success

The Role of the ACP Facilitator

•To promote•To expedite

•To assist•To guide

How can you get involved?

Key Coordinators:• Bon Secours: Rebecca Gruszkos, LCSW, ACP

Project Educator 658-9460, rebecca_gruszkos@bshsi.org

• HCA: Debbie Griffith: Deborah.Griffith@HCAhealthcare.com Karen Roesser: Karen.Roesser@HCAHealthcare.com

• VCU: Ken Faulkner, ken.faulkner@vcuhealth.org