An Innovative Patient-centered Approach to Improve Advance Care Planning:
Catalyzing Patient Decision Making at End-of-Life
Helen D. Blank, Ph.D.
May 31, 2012
Our Perspective on Advanced Illness Care
What the literature has to say about the quality of care . . . .
– Patient and Family Centered Outcomes at the End of Life (Teno, JAMA, 2004)
– Trends in the Aggressiveness of Cancer Care Near the End of Life (Earle, JCO, 2004)
– Family Perspectives on End-of-Life Care at the Last Place of Care (Teno, JAMA, 2004)
– Geographic Variation in Hospice Use in the United states in 2002 (Connor, J. Pain &
Symptom Mgmt, 2007)
– Early Palliative Care for Patients with Metastatic Non-Small –Cell Lung Cancer (Temel,
NEJM, 2010)
– Ask a Different Question, Get a Different Answer: Why Living Wills are Poor Guides to Care
Preferences at the End of Life (Winter, J. of Palliative Medicine, 2010)
– Quality of End-of-Life Cancer Care for Medicare Beneficiaries (Goodman, Dartmouth
Institute Publication, 2010)
– American Society of Clinical Oncology Statement: Toward Individualized Care for Patients
With Advanced Cancer (Peppercorn, JCO, 2011)
Our Perspective on Advanced Illness Care
What the literature has to say about the cost of care . . . .
– Medical Care Inconsistent With Patients’ Treatment Goals: Association with 1-year
Medicare Resource Use and Survival (Teno, Journal American Geriatric Society, 2002)
– Patient and Family Centered Outcomes at the End of Life (Teno, JAMA, 2004)
– Health Care Costs in the Last Week of Life Association with End-of-Life
Conversations (Zhang, Archives of Internal Medicine, 2009)
– Dartmouth Atlas of Health Care (Dartmouth Institute Publication, 2010)
– Determinants of Medical Expenditures in the Last 6 Months of Life (Kelley, Annals of
Internal Medicine, 2011)
– Bending the Cost Curve in Cancer Care (Smith, NEJM, 2011)
Our Perspective on Advanced Illness Care
What the literature has to say about the process of care . . . .
– Cancer Patients’ Roles in Treatment Decisions: Do Characteristics of the Decision
Influence Roles? (Keating, JCO, 2010)
– Advanced Care Planning and Hospice Enrollment: Who Really Makes the Decision to
Enroll? (Hirschman, Journal of Palliative Medicine, 2010)
– A Failing Medical Education Model: A Self-Assessment by Physicians at All Levels of
training of Ability and Comfort to Deliver Bad News (Orgel, Journal of Palliative Medicine,
2010)
– Provider Communication and Patient Understanding of Life-Limiting Illness and Their
Relationship to Patient Communication of Treatment Preferences (Wagner, Journal of Pain
and Symptom Management, 2010)
– Patient-Clinician Communication about End-of-Life Care Topics: Is Anyone Talking to
Patients With Chronic Obstructive Pulmonary Disease? (Reinke, Journal of palliative
Medicine, 2011)
– Informing And Involving Patients To Improve The Quality of Medical Decisions (Fowler,
Health Affairs, 2011)
Our Belief: Root Cause of Quality and Economic Inefficiencies are the Result of Two
Broken Processes
The communication and care decision making processes across the key stakeholders
during advanced illness are either non existent or dysfunctional
What are the potential levers in order to address this issue?
Patient
Family
Payer
Physician
The Advanced Illness Stakeholder Triad
“The data – and my clinical experience – suggest that when patients and doctors spend
the time to talk about their values and goals and the likely outcomes of proposed
treatments most – but not all – will opt against a trial of all life-prolonging technologies
available.”
Dr. Sean Morrison, Director NPCRC
Our Perspective: The Solution is Elegant, Execution is More Difficult
A Solution
Catalyze the individual and their family to become more active in their health care
communication and decision making processes with their physicians so that decisions are
consistent with their life preferences and priorities thereby increasing the quality of care during
advanced illness.
Why This is Messy
•
There is no objectively correct answer to…
– What constitutes a good quality of life or good priorities while living with advanced illness
– What constitutes living well for the individual
•
Dynamic not Static
•
There is no consensus regarding what is effective advance care planning
•
There is no “how to” manual to guide patients in talking about this emotion-laden,
taboo subject
– Open communication hindered by patient’s own fears, social network, medical
environment
The Living Well Program: Patient Centered Advance Illness Care Counseling
Patient-Centered
Counseling
• Empowerment
• Understanding
• Definition of
Personal QoL
• Internal
Motivation
Informed Decision
Making
• Accurate
Information
• Weigh pros & cons
• Care Choices
Behavior Change
• Counteracts defense
mechanisms &
environmental inhibitors
• Activate participation
• Ability to act
Purposeful Participation
Personalized Care
Decision Making
Meaningful Process
The Living Well Program: Patient Centered Counseling
•
Behavior Change
– Change passivity into activity
– Engage in meaningful and ongoing process of end-of-life dialogue with
loved ones and medical team
– Focused on patient’s priorities, goals, values, and preferences so these are
reflected in decision making
•
Ambivalence & Motivation
– Ambivalence is the antithesis of change
– Resolving ambivalence is the key to promoting change
– Change arises through its relevance to a person’s own values and concerns
Behavior Change
•
Ready, Willing, Able to Change Behavior
– See the value of change
– Timing is right
– Have the confidence to succeed
•
Readiness Stage Assessment
–
–
–
–
–
•
Precontemplation
Contemplation
Preparation
Action
Maintenance
Stage Based Interventions
– Meet the individual where they are
– Assist in moving the individual to behavior change
Ambivalence & Motivation
•
Ambivalence
–
–
–
–
–
•
Feeling two ways about something
Normal process of human nature
Competing motivations associated with both sides of conflict
Cannot be understood outside the societal context of family, friends, community
Getting stuck in ambivalence = no decision or no change
Motivation
– The likelihood change will occur is strongly influenced by interpersonal interactions
•
Motivational Interviewing Approach
– Originally developed by William R. Miller & Stephen Rollnick for application in
addiction field
– “A client-centered, directive method for enhancing intrinsic motivation to change by
exploring and resolving ambivalence.”
– Method of communication (guiding style) rather than a set of techniques
– Can not impose change that is inconsistent with the person’s own values and beliefs
– Collaborative, Atmosphere of partnership. Not expert clinician/passive patient
– Evocative - Resources & motivation reside within the client
– Honoring Patient Autonomy
The Living Well Program Methodology
To catalyze the advanced illness individual to initiate and maintain a dialogue with family and
physicians about what may be most important to them in anticipation of their medical situation
deteriorating so that these priorities may serve as the basis for shared health care decision
making
• Driven by the participant self defining and communicating their life priorities during the course of
their illness to their family and physicians so that these priorities may serve as the basis of health
care decision making
• Grounded in Cognitive Behavioral and Patient Centered Counseling Methodologies and Strategies
• Developed during 2008-2009 in association with Dr. James Prochaska and Pro-Change
Behavioral Systems Inc. Incorporates Prochaska’s Transtheoretical Model of Behavior Change
adapted for the specific desired positive behavior and existential context of situation that the
participant is experiencing.
• Counseling techniques based on Rollick and Miller’s Motivational Interviewing in Health Care work
• Goal of the program is process based and independent of the specific decisions and priorities
which result from the desired process
-Primary program and counselor evaluation metrics based on achieving desired
process/behavior
The Living Well Program: Key Principles
•
Understanding of what lies ahead
– Planning requires knowledge of disease trajectory
– Can’t plan if you don’t know what you are planning for
– Personalized trajectory -- best case, worst case, and most likely case
•
Active Participation by patients, families, physicians
– Ready, willing, and able to participate in process
– Understanding and acceptance of each individual’s role in the process
• Process of evaluation and re-evaluation involving key stakeholders
-
Recent research suggests that preferences for care are not fixed but emerge
from a process of discussion and feedback within the network of the patient's
most important relationships
• Ongoing communication throughout the illness experience
– An approach that emphasizes communication, building trust over time, and
working within the patient's most important relationships
The Living Well Program: Counseling Methodology
Motivation for Change
Behavior Change
Integrate Priorities
into Care Decisions
Explore illness experience
& identify priorities
• Personalization of living/dying
• Review of priorities, values, goals
• Decision making that
supports achievement
of goals/priorities
Preparation, Re-evaluation,
Communication
• Planning in advance
• Re-evaluation as needed
Empowered Patient
• Patient-centered counseling to enable personalized illness experience
• Motivational interviewing to create empowerment for effective decision making
Informed & Prepared Patient
• Current Medical Situation
• Future Medical Situation Scenarios
• Current/Future Care Decisions
• Transition Points
• Communication Vehicles
• Areas of Support
Member Identification – Our Initial Models
Claims Based Algorithms to Identify Potential Members 9 Months Prior to Death Followed
by Outreach Qualification by Counselors
Terminal Death Trajectory
• AIDS
• Cancer
40% of Participants
Engagement
Zone
Healthy
Functional
Health
Status
Dead
t
Chronic Deteriorating
40% of Participants
Death Trajectory
Engagement
• CAD
Zone
Healthy
• CHF
Functional
• COPD
Health
• ESRD
Status
• Liver Disease
Dead
Value DIAGCD=428.XXX AND >=1 of
E0424-E0444, E0460, E0461, E0463E0481 in HCPCSC On Same Row AND
SVCDAT After Month-9 AND MBRDOB
Before Month-840. Condition must
occur at least two times 30+ days apart
Dead
Value DIAGCD=332.XXX AND >=3 of 99221,
99222, 99223, 99281, 99282, 99283, 99284, 99285
On a Unique SRVCDAT In HCPCSC over a
Six Month Interval
t
5% of Participants
Engagement
Zone
Healthy
Functional
Health
Status
Dead
t
15% of Participants
Frailty Death Trajectory
Engagement
• ALS
Zone
• Dementia
Healthy
• Parkinson’s
Functional
Health
Status
Acute Death Trajectory
• Acute Serious
Medical Situation
• Surgical Complication
• Sepsis
• Trauma
Value DIAGCD=183.XXX AND >60 Day
Interval Between Adjacent Values in
SVCDAT That Also Contains Specified
J Code in HCPCSC On Same Row AND
>= 3 DIAGCD=183.XXX
After Month-6
t
The Living Well Program: Counseling Process
Living Well Program Process Modules (conducted over multiple sessions, typically three-five)
PAST/CURRENT
Introduction &
Engagement
Client Narrative
PAST/CURRENT
Eligibility Qualification
CURRENT
PROJECTED
Current
Priorities
(Setting,
Communication
& Integration)
Transition &
Staging Process
Precontemplation
Client
Narrative
"What Ifs"
Contemplation Preparation
"What if"
Priorities
Scenario-Based
(Setting &
Communication)
Action
Refinement of
"what if" priorities
& preferences;
Re-evaluation as
changes occur
Maintenance
EOL
Implementation &
Decision Making,
EOL Advocacy
Behavior Stage Based Action Strategies, Plans & Follow Up
Behavior Stage Based Action Strategies, Plans & Follow Up
Motivational Interviewing Based Techniques
Tools
Deliverables
Scripts and Branching Logic (Conversation Flow)
Patient Profile
Educational Materials for Patient
Call Log
Tools & Decision Aids for Patient & Counselor
ACP Docs
Counseling Workflow Automation
Counseling Capability and Resources to Deliver Program
•
Counselors Experienced in the application of CBT, MI and BM
•
Understanding and appreciation for the issues specific to end of life counseling as per
ACA guidelines
•
Demonstrated counseling agility and “condensed” counseling application
•
Personal comfort surrounding the topics of death and dying
•
Self motivated and high degree of clinical focus and accountability
•
Proprietary education and training program to optimize quality and consistency of
program
•
Continuous training and supervision
•
Value of specialization and experience base
Counselor Introduction, Eligibility Assessment , Engagement
•
Goal of initial call is introduction of the program and determine willingness to
participate
•
Clinical interview process to determine eligibility/qualification verification
•
Potential Outcomes of Initial Call
– Client determined to be ineligible
– Case Exploration
– Eligibility verified and client enrolled in the program
•
Engagement Interview
•
Interrelated Intervention Topics
– Client understanding of their illness
– Communication with important people in their lives
– Medical decision making process
•
Stage of Change Determination
The Living Well Program Stages of Change Process
Staging Definitions
Precontemplation
Staging/"what if" discussion initiated and client has given no thought to "what if"
priorities/preferences
Contemplation
Client is thinking about "what if" priorities/preferences, but has made no
commitment to "what if" priorities/preferences in relation to future medical decision
making
Preparation
Client has formed and committed to "what if" priorities/preferences but has not
communicated these with physician and/or family and has not committed to a
communication plan
Action
Client has committed to communicate with their physician and/or surrogate their
well-informed, priority-based, decisions to the "what ifs" given their current
medical situation and is able to verbalize a communication plan
Maintenance
Client has effectively communicated their well-informed, priority-based decisions
and enters the process of refinement, re-evaluation, and continued
communication of priorities/preferences/decisions as situation changes
EOL Advocacy
The "what ifs" of the current medical situation are the end-of-life "what ifs."
Current medical situation is now including EOL planning/decision making. The
"what ifs" have gone from hypothetical to reality.
The Living Well Program Organization
Vital Decision counselors do not:
• Communicate or utilize personal medical information patients have not
communicated to them
• Provide medical advice
• Undermine the medical plan or team
• Make choices for the patient or family
• Judge the patient’s wishes or choices
• Discuss coverage or claims issues
• Provide general mental health counseling
• “Drop” the member following hospice enrollment
Program Infrastructure and Support: Controls
• Best Practice, evidence driven methodology based on recognized and accepted academic principles
Design
• Process goal oriented program, program goal is decision independent
• Focused on the self defined intrinsic priorities of the participant and paced to individual’s ability to
participate
• Promotes alignment and communication among stakeholders driven by the participant and not a third party
External
Governance
Process &
Organization
• Voluntary participation throughout program
• Defined counseling process that is adhered to by counselors and monitored and measured by management
• Complete, real time information transparency
• Success based on quality improvement measures
• Co located counseling organization for quality monitoring and improvement
• Utilization of specialized, highly qualified and trained resources
• Vital Decisions’ Multi-disciplinary Program Advisory Board
- Clinical, Health Care Policy and Bioethical Perspectives
• Client Oversight of Program via formal Steering Committee
• Independent Agency Evaluation and Recognition
Our Value: Impact Analysis Methodologies
•
Member and Family Member Satisfaction Survey
– Satisfaction
– Perceived Value
– Client Service
•
Service Utilization and Economic Impact Analysis
– Client defined scope, methodologies and implementation resources
– Wide ranging
– Vital Decisions Preferred Approach: Retrospective, match case controlled
analysis examining utilization and spend occurring during the last three months
of life
Member/Family Survey Results
# Satisfaction Surveys Mailed
# Satisfaction Survey Responses
1081
246
23%
The Vital Decisions program helped me to focus on what is most important to me as I deal with my illness.
Median=
4
The Vital Decisions program helped and/or supported me in making decisions regarding my medical care.
Median=
4
My Vital Decisions counselor was friendly and courteous.
Median=
5
My Vital Decisions counselor was sensitive to my situation.
Median=
5
I was satisfied with the service that Vital Decisions provided.
Median=
5
I would recommend Vital Decisions to others in similar situations.
Median=
5
Scale for Responses 1=Not at all 3=Sometimes 5=Always
Comments
I expected to have a question and answer session with no real relating and faint interest or direction. She quite surprised me by her
in-depth questioning and guidance that I felt I would need to shoulder alone before our conversation. Her counseling was a
relief to me.
I have never encountered such a warm, pleasant, and refreshing associate in many yrs. I am so glad you have decided to put the
human touch back into your company. Nothing makes a person feel better than compassion of another human being.
It was easy to talk with my counselor by phone more so then I had expected since I have never met her in person. Interesting way to
receive counseling
My situation with my husband is ongoing. I appreciate having this service to be able to assist with some very difficult decisions
looming ahead.
For the first time during the course of my illness, someone took a genuine interest in explaining the delicate topic of possible
scenarios that may happen and the choices that are available. As a result of my conversations with Vital Decisions, I was better
prepared for any unforeseen circumstances.”
Vital Decisions was instrumental in helping me tell my family how to give my mother what she wanted.
This was my first experience with a family member who was seriously ill. The counselor was able to help
me be strong for my mother when she couldn’t be for herself
Economic Impact Analysis Overview ~ Client X and Client Y
 Client X (Commercial Plans), Client Y (Commercial and MA Plans)
 Metric Under Examination – Total Medical Cost of Care During the Last Three Months of Life
 Retrospective Case Matched Control Group of Pre Program Decedents vs. Program Group
Decedents
 Pairs matched based on the following rules
 Underlying Diagnosis – Required to be exact match
 Age at Death – Required difference to be ten years or less
 Medical Spend 4 through 12 months prior to death – Required difference to be $6,000 or
less
Average Three Month
Minimum Cost Difference
Probability of a Cost Difference Greater
Cost Difference
with 95% Confidence
Than Zero
Client X
$28,072
$15,489
99.94%
Client Y
$22,169
$9,069
99.71%
Independent Agency Evaluation & Recognition
Vital Decisions Recognized as a Health Management Best Practice
in Consumer Empowerment & Protection
Washington, D.C. April 9, 2009 – URAC, a leading independent accrediting
organization, has announced that a distinguished panel of judges selected Vital Decisions
as a Best Practice in Health Care Consumer Empowerment and Protection Awards
competition. The competition drew entries from across the nation and represents the best
Title: Satisfaction and Care Choices
Following a Telephone Consultation Date:
Thursday, June 18, 2009 Time: 11:00 AM 03:00 PM
Vital Decisions Living Well
Program for Individuals with
Advanced Illness Receives
Award at the 2010 Annual
Assembly American Academy
of Hospice and Palliative Medicine