Patients - Gundersen Health System

Respecting Choices®
Disease Specific-Patient Centered
Advance Care Planning:
A Program to Improve End-of-life
Decision Making
Linda Briggs, MS, MA, RN &
Sandy Schellinger, RN, MSN, NP
© Copyright 2009 All Rights Reserved – Gundersen Lutheran Medical Foundation, Inc.

Respecting Choices…An Advance
Care Planning System That Works
• In a 2008 study of all adult deaths in La Crosse
county, the following results indicate the ongoing
success of the Respecting Choices program
– At death, 90% of adults have written advance directives
– In 99% of cases, the AD is in the patient’s health record
– In 67% of cases, a POLST form is completed
– In virtually all cases, medical care was consistent with
patient’s preferences
• Hammes BJ, Rooney BL, Death and end-of-life planning in
one Midwestern community…ten years later, AAHPM poster
presentation 2009, Dallas, TX

The Problem: Planning for Patients
with Life-limiting Chronic Illness
• More than 90 million Americans live with
chronic illness
• 7 out of 10 Americans will die from chronic
illness
• CHF, COPD, Cancer, CAD, Renal failure,
PVD, Diabetes, Chronic liver failure,
Dementia

End-stage Chronic Illness
• Don’t fit the classification of “dying”
• Incomplete prognostic information
• Many have been “rescued”
• Slow, progressive decline in function
• Sudden complications without adequate
expression of health care preferences
• Difficult, confusing choices

Chronic Illness:
Slow Decline, Periodic Crisis, Death
Health Status
Decline
Crises
Time
Death
Field & Cassel, 1997

Tracking the Care of Patients with
Severe Chronic Illness
The Dartmouth Atlas of Health Care 2008
– Lead Author: John E. Wennberg
– The Dartmouth Institute for Health Policy and
Clinical Practice Center
for Health Policy Research
www.dartmouthatlas.org

Atlas Reports
• Extensive unwarranted variation in quality
of care delivered to Medicare recipients in
last two years of life
• Variations in spending are not due to
prevalence of chronic illness
• Variations in spending due to differences in
“supply-sensitive” care

“Supply-Sensitive Care”
• Services where the supply of specific
resources has a major influence on
utilization
• Physician visits, hospitalizations, ICU stays,
imaging services, among others

More is Not Better:
High-spending Regions Report…
• 32% higher per capita
hospital beds
• 65% more medical
specialists
• 26% fewer family
practitioners
• More hospital stays,
MD visits
• Mortality slightly
higher after AMI, hip
fracture
• More likely to report
poor communication
with MD and
inadequate continuity
of care
• No difference in
patient satisfaction

Why Can More care Be Worse?
• Hospitalizations are risky e.g., hospital
acquired infections claim 100,000 deaths
per year
• Increase use of diagnostic tests to find
problems that would not harm patient
• Increase complexity of care, e.g., more
MD’s, miscommunication, medical errors

Hospital
Inpatient
Reimbursements
per decedent
during last 2
years of life
Hospital days per
decedent during
last 2 years of
life
Reimburse per
day during last 2
years of life
Gundersen
Lutheran
18,359
13.5
1,355
Franciscan Skemp
19,194
15.8
1,210
Meriter, Madison,
WI.
22,166
18
1,233
St. Joseph's
Marshfield
23,249
20.6
1,126
UW Hospitals and
Clinics
28,827
19.7
1,462
Cleveland Clinic
31,252
23.9
1,307
St. Mary's Mayo
31,816
21.3
1,497
UCLA
58,557
31.3
1,871
US Average
25,860
23.6
1,096

• “Concern about the possibility that some
chronically ill and dying Americans might
be receiving too much care: more than they
and their families actually want or benefit
from.”
– Tracking the Care of Patients with Severe Chronic Illness,
www.dartmouthatlas.org pg. 4

One Solution…
Assist patients to make informed end-oflife
treatment choices well before a medical
crisis and develop plans to
honor these choices

Respecting Choices®
Disease Specific-Patient Centered
ACP Intervention: Key Features
‣ 1.5 hour interview with
patient and healthcare
agent in outpatient setting
‣ First assesses dyad’s
understanding of illness
‣ Structured interview that
integrates communication
techniques

Respecting Choices®
Disease-Specific, Patient Centered
ACP Intervention: Key Features
‣ Provides context for
decision making
through Statement of
Treatment Preference
form that assists in
clarifying goals for lifesustaining
treatment.

Respecting Choices®
Disease-Specific, Patient Centered
ACP Intervention: Key Features
‣ Delivered by trained
professional facilitator
who has clinical
experience, comfort
level with issues, and
good communication
skills

DS-PCACP Interview Stages
1. Assess illness beliefs, goals, values
2. Explore experiences
3. Explain purpose of ACP
4. Clarify goals for life-sustaining treatment
5. Summarize what was learned
6. Develop follow-up plan

Expected Outcomes
• Assessment of
patient’s
understanding of
illness and
complications
• Clarification of goals,
values, and beliefs
• Understanding of
treatment benefits and
burdens
• Documentation in
medical record of
patient goals for care
in situations of worst
outcomes
• Strengthening role of
healthcare agent
• Identification of need
for referrals for other
services

DS-PCACP Research
• AHRQ funded randomized control study
• Pilot replication with cardiac surgical
patients
• Pilot replication with adolescents with
HIV/AIDS

Patient-Centered Approach
to Advance Care Planning in
End-Stage Illness
Karin T. Kirchhoff, PhD, RN, FAAN - Principal Investigator
Bernard J. Hammes, PhD
Linda A. Briggs, MS, MA, RN
Karen A. Kehl, PhD, RN, ACHPN
Funded by the Agency for Healthcare Research and Quality
5R01HS013374-04
04
20

Method
Design
Randomized controlled study, stratified by patient
disease (CHF vs. ESRD) and site (La Crosse vs. Madison)
– Randomization by sealed envelope method
Subjects
Patients with end-stage CHF or ESRD patients and their
surrogate health care decision makers from areas
around La Crosse and Madison, WI
• 312 dyads (patient & surrogate)
– 133 La Crosse CHF
– 98 La Crosse ESRD
– 45 Madison CHF
– 36 Madison ESRD

Method
• Pairs complete baseline questionnaires on
demographics, and functional status.
• Pairs assigned to the usual care group receive
standard advance directive care.
• Pairs assigned to the intervention group receive, in
addition to standard advance directive care, the
intervention interview by trained interveners/facilitators.
Patients in both groups
complete:
•Statement of Treatment
Preferences
•Decisional Conflict Scale
•Knowledge of ACP
Surrogates in both group
complete:
•Statement of Treatment
Preferences for the Patient
•Knowledge of ACP

Elements of PC-ACP Intervention
• An in-depth structured interview with patient
and surrogate in outpatient setting
• Exploration of dyad's understanding,
experiences, and goals for living well
• Use of active communication techniques to
engage dyad
• Use of decision-aide tool (Statement of
Treatment Preferences) to assist in clarifying
goals for life-sustaining treatment
• Delivered by trained facilitator

Results
Congruence on Statement of Treatment Preferences
100.00%
90.00%
80.00%
70.00%
Percent congruent
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
1 2 3 4 Latitude
Control 56.25% 54.10% 67.21% 57.14% 41.94%
Intervention 88.57% 75.76% 86.57% 82.61% 82.61%
Situation number

Conclusion
• The increased agreement on the Statement of
Treatment Preference form indicates that
intervention surrogates are more prepared to
make future decisions for their loved one
• Patients and surrogates were highly satisfied
with the quality of the communication (mean
patient rating of 15.9 on a 1-171
17 scale)
• Care was consistent with documented
preferences
– Results submitted for publication

Cardiac Surgery
Patients N=32
Intervention group:
Increase
patient/healthcare
agent congruence
Decrease difficulty
in making choices
No difference in
anxiety
Song, 2005

DS-PCACP with Adolescents with
HIV/AIDS
• Medically stable adolescents (14-21 years
of age) and parent/guardian
• N=38 dyads, 92% Black
• Significant increase in understanding of
patient goals over control group
• Intervention patients rated the quality of
communication very good to excellent
• Lyon, 2009, Pediatrics 123(2)

Goals of Advance Care Planning
• Ensure clinical care consistent with wishes
• Improve decision-making process
– Facilitate shared decision-making among
patient, physician and proxy
– Allow proxy to speak on behalf of patient
– Respond with flexibility to unforeseen clinical
situations
– Provide education regarding issues

A Means to a Better End…
• Improve patient outcomes
– Improve patient well-being by reducing over
treatment and under treatment
– Reduce patient concern’s regarding burden on
family and significant others
• Teno,1994

Allina Hospitals and Clinics
• Integrated system with a patient
centered care model
• One Electronic Medical record
• 11 hospitals in MN and WI
• 85 Primary Clinics
• 4 th largest medical group in the US
• > 120,000 hospital admissions
• 4.5 Million Clinic visits
• Home and Community Services 28
County Service Area (Home Care,
Hospice, Palliative Care, Care
Navigation, Senior Care Transitions,
Care Management, DME)
• 110,000 Home Care and Hospice visits
• 15 Community Pharmacies
• Medical Transportation
• Medical Laboratories

Patient and Family Centered Care Goal:
Aim: All patient’s and families goals, wishes, values and health care preferences will be
honored at any point of care at any time and care setting.

Chronic Advancing Disease:
Continuum of Care Model
DISEASE SPECIFIC ADVANCE CARE PLANNING
Disease modifying therapies to abort illness or treat for possible cure
Presentation / Exacerbation of chronic progressive illness
Hospice
Benefit
Bereavement
Care
Palliative Care
Diagnosis
of illness
Therapies to relieve suffering
and/or improve quality of life
Home Care
Palliative Care
6m Death
-----------------
-----------------
-----------------
Hospice Care

END OF LIFE – patients and families
most likely to die in the next 6-12
months. Ongoing discussions on a
regular basis by care team, i.e. PCP,
Hospice , Palliative Care, hospital
staff around goals, values, and
health care wishes as their health
progresses. As a result the patient
may complete a POLST form and
update current HCD.
End
of Life
Disease Specific
Patient Centered
Advance Care
Planning
(DS-PCACP)
Basic Advance Care
Planning
Goal: Allina Advance Care
Planning Standard
across the care continuum
2009-2013
DSPCACP - All patients and families
with chronic advancing illness most
likely to die in the next several years
have assistance in intentionally
discussing goals, values and health
care wishes specific to their own
individual situation by a trained ACP
facilitator. Outcome: Documentation of
ACP session in medical record;
completed documents, i.e. HCD,
statement of treatment preferences,
POLST.
BASIC ACP - All Patients 50 and older are encouraged to
identify a POAHC, discuss and clarify health care wishes,
goals, and values for a sudden health event where they may
be unable to speak for themselves. A HCD may be completed
as a result of basic ACP.

Where to Begin in Such a large
Health System?
2008 System Goal: Improving Care of Heart Failure
across the Care Continuum demonstrated by
reducing the number of unplanned hospital
readmissions by 10%
• ACP Pilot DSPCACP in Heart Failure Population
– 2008 ACP Goal: complete 250 DSPCACP session with
heart failure patients and their surrogate.
• 268 sessions completed by 10 trained facilitators (palliative
care clinicians)

100
ACP Treatement Preferences
DSPCACP
Sessions
80
60
40
20
0
L Surv /H T m t
H Surv /L F x n
H Surv/L Cog
Code Status
Comf ort Care
Not Sure
Not Sure
Full Treatment
Comf ort Care
Summary
of
Treatment
Choices
What do you understand about your condition?
What care might you want under various circumstances? e.g.:
Low probability of survival, but with good function,
High likelihood of survival with functional impairment,
High likelihood of survival with cognitive impairment.
What do you know about CPR? Has your doctor talked about how it might apply in your case?

Honoring Patient Wishes Current State within Allina
1/1/08 - 10/08 Heart Failure Patients:
Availability of HCD in EMR
Source Ace Report and ACP Audit
90
80
70
60
50
40
30
20
10
0
ACP n=220
89%
83%
40%
No ACP n=6,621
16%
HCD (%)
HCD In chart (%)

40.0%
35.0%
30.0%
25.0%
23.0%
20.4%
20.0% 18.8%18.9% 19.3%
Allina Hospitals and Clinics
Percent HF (Pdx) Unique Patients That Had One or More Readmissions Within 30 Days
Median Readmit Rate
17.1%
22.7%
18.9%
20.1%
22.3%
23.8%
22.5%
19.6%
21.1%
24.9%
21.8%
21.2%
19.7%19.6%
17.9%
24.1%
16.5% 17.0% 20.4%
25.1%
24.4%
16.8%
20.0% 19.6%19.8%
17.6%
20.9%
19.4%
19.7%
19.8%
HF
Readmission
Rate Allina
Health System
vs. with ACP
20%
15.0%
2008 Goal = 18.12%
10.0%
% Rehospitalization of ACP pts 1/1/08-10/08
Source ACP Chart Audit
5.0%
0.0%
2006 1
2006 3
2006 5
2006 7
2006 9
2006 11
2007 1
2007 3
2007 5
2007 7
20
2007 9
2007 11
2008 1
15% 15%
2008 3
2008 5
2008 7
2008 9
2008 11
19%
15
10
5
0
30 days 60 days 90 days
3

Outcomes of ACP in Patients Dying of Heart Failure, 2008
100
90
80
70
60
50
40
30
20
10
0
No
ACP
ACP
No
ACP
ACP
No
ACP
ACP
Deaths (%) HCD in chart Hospice LOS

Allina Implementation Strategies
• Engaged leadership and key stakeholders to create consistent message.
• Culture: ACP needs to be a normal part of conversation for all patients.
• Started Pilot with a specific population of patients vs. basic ACP
– Easier to “sell” ACP because these patients really needed ACP.
• Identified clear outcomes and measures.
• Small test of changes to gain buy in and adjust processes and
workflow.
• Set up Systems for success
– i.e. ACP on order sets for heart failure patients.
• Train engaged and interested staff (Palliative Care RN’s and SW’s, RN
Care Managers in the Clinic)
– Some staff were required to get trained as ACP is part of their role but
may not be the right “fit” to facilitate ACP discussions

Allina Barriers/Challenges
• Lack of centralized ACP documentation.
• Large Health System
• Primary Care Physicians
• Implemented DSPCACP before Basic
– Most patients did not have basic ACP before session
which made the actual session longer and complex
• Palliative Care Program Director managing ACP
program
– Pros and Cons
• Economics – ACP role does not pay for itself.

Honoring wishes at time of death:
68 year old male with CHF, COPD,
Respiratory Failure
• ACP Session: 6/23/08; Understood his condition as having heart disease and diabetes.
Also understands that he is at risk for kidney failure. His disease burden included
dizziness, fear of falling, swelling in his legs, shortness of breath and dependence on
oxygen. Quality of life dramatically changed by his limited declining status. Hope for
improvement of sores on his legs but knows he cannot cure his lung disease. Statement
of Treatment preferences – full code; also, if he suffered a serious complication with low
probability of survival or he survived a serious event and had significant cognitive or
functional deficits he would want to stop all efforts to keep him alive and focus on
comfort. ACP note and HCD documents were in the EMR.
• Date of death: 7/27/08; EMR Death D/C summary and course of care during
hospitalization – In ICU on BiPAP for respiratory failure. Deterioration in mental status.
• Per MD note in summary, “In Accordance with his well stated previous wishes and
wishes of his family, aggressive medical treatments were discontinued and the
patient was made comfort cares only. The patient was kept comfortable with PRN
morphine. The patient died peacefully on 7/27 with family present.”

Improving Families confidence and
reducing burden of decision making
• 64 y/o married male with end-stage ischemic cardio-myopathy, s/p aortic
valve replacement. Waiting for heart transplant. ACP Session completed
3/26/08: full code try CPR for 3-4 minutes if it does not work let me go. If
seriously ill and was cognitively or functionally impaired” just let me go”
• 5/27/08 hospitalized for worsening heart failure. 6/8/08 received heart
transplant which was uneventful. Re-intubated 8 days after transplant.
Went downhill; subsequent infections and multi-system organ failure.
• Per MD D/C summary, “ The family has been extremely supportive
throughout this ordeal and the decision was made on Mr. H’s wishes not to
be kept alive on life-support.” Died 7/7/08
• Decision Making: Per hospital staff and spouse, there were three times
during the last few weeks of life where the spouse needed to make
treatment decisions. Each time she pulled out the documents and
referenced the ACP session discussions to help her make the decision.

Allina ACP goals
• 2009
– 750 patients (500 heart failure and 250 other chronic illness) will receive
ACP session resulting in completed and documented advance care plan.
– 250 Allina Home and Community Services – Home Care patients will have
a documented basic advance care plan
• 2010
– 5000 patients and employees of the Allina Health System will have a
documented advance care plan.
• 3000 Disease Specific ACP session will be completed for patients with
chronic advanced illness.
• 1500 basic ACP documented for Allina patients age greater than 50
years old.
• 1000 Allina employees will have a basic ACP documented.
• 400 POLST forms completed for patients in hospice, LTC, AL, TCU
• 2013
– All patients greater than age 50 years old will have a documented ACP in
their medical record.

Summary:
Advance Care Planning in Allina
Basic and Disease
Specific Advance Care
Planning
A Process
Health Care Directive /
Living Will
POLST
A Patientdirected
Document
A Physician’s
Order

Next Steps/Questions
• When does Advance Care Planning become
standard/best practice?
• Are there other opportunities to research use of
ACP for patients other cultures and diseases.
• ACP reimbursement:
– Government and Third Party Payers payment for ACP
• Minnesota U Care reimbursing for ACP as of 7/1/09