Promoting Community-Wide
Awareness and Engagement in
Advance Care Planning
Rebecca Gruszkos, LCSW, ACHP-SW
ACP 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 Planning
Current 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 Ensuring agent’s acceptance of role and
patient, not validating agent’s acceptance ability to honor pt’s wishes even if not in
or understanding of role
agreement with those wishes AND
documenting this in ACP note/Advance
Directive
Our Local Setting
• Richmond VA – diverse in race & ethnicity, and socioeconomics, ~ 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?
5 - Have thought
about it a lot
50%
66%
4
16%
3
18%
2
7%
1 - Haven't thought
about it at all
10%
0%
n = 600
20%
40%
60%
Q6. To what degree have you thought about your own
future healthcare wishes?
80%
100%
How Important Is It To Discuss Your Future Healthcare
Wishes with Family or Loved Ones?
5 - Very important
70%
85%
4
15%
3
8%
2
2%
1 - Not at all
important
5%
0%
n = 600
20%
40%
60%
80%
Q7. In your opinion, how important is it to discuss your future healthcare wishes with your family or
loved ones?
100%
To what extent have you discussed your future
healthcare wishes?
A careful and complete review
of your wishes.
35%
A good exchange of ideas
about your wishes.
24%
A brief conversation about
your wishes.
26%
A few comments about your
wishes.
12%
0%
20%
n = 534
Q12. To what extent have you discussed your future healthcare wishes?
40%
60%
80%
100%
Level of readiness to complete a document that
outlines your future healthcare wishes
I already completed such a document
and it reflects my wishes.
29%
I already completed such a document
but it needs to be reviewed or changed.
7%
I am ready to complete such a
document or have already started.
16%
I see the need to complete this
document but I am hesitant to do so.
29%
I see no need to complete this
document.
14%
Unsure
6%
0%
n = 600
20%
40%
60%
Q16. Please select the answer that best describes your level of readiness to complete a document
that outlines your future healthcare wishes.
80%
100%
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
Total
Avg per
system
# of people invited
177
275
388
840
280
# scheduled an appointment
91
113
116
320
107
51%
41%
30%
38%
73
109
201
383
41%
40%
52%
46%
% scheduled
# refused (to schedule) appointment
at time of invitation
% refused
128
Goal: Greater than 50% of people invited to participate in Honoring Choices
facilitation will agree to schedule an appointment with a facilitator.
In the first six months of HCV
# of people who participate in one or
more facilitated Honoring Choices
conversations
% invited who have participated
# of people who complete a written
plan
% with conversations who completed
written plan
A
B
C
Total
Avg per
system
51
106
103
260
87
29%
39%
27%
31%
24
94
42
160
47%
89%
41%
62%
Goal: Greater than 50% of people who participate in an Honoring Choices
facilitated discussion will complete a written plan.
53
In the first six months of HCV
# of documented Honoring Choices
discussions in medical records
% documented
A
B
C
Total
Avg per
system
47
104
94
245
82
92%
98%
91%
94%
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 longterm priority of executives
Outcomes may take years to
generate
Are your leaders aware of the
upfront efforts needed to produce
results in the long term?
Are your stakeholders in this for the
long haul?
Front-line folks can be
overwhelmed by measurement
tasks
Community engagement takes a lot
of field work
Are you balancing your
measurement demands with other
duties and priorities?
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