LifeCourse:
A Late Life Supportive Care Research Project
Sandy Schellinger, RN MSN NP-C
Co-Investigator Center for Healthcare Research and Innovation
Allina Division of Applied Research
Objectives
Participants will be able to:
Describe the LifeCourse
Late Life Supportive Care Model
Understand and describe how advance
care planning should be integrated into
the late life experience.
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A Robina Foundation grant in partnership with
Abbott Northwestern Hospital, Allina Clinic and
Community Division, independent physicians,
Walker Methodist, and Augustana Care to
develop a new supportive care model for
individuals late in life.
6-Year Study Timeline
Phase I: Design/build care model
2012
2013 - 2014
Phase II: Validation
2015 - 2017
Model Foundation:
The Felt Experiences of Care
• Wife of a chronically ill husband: “We’ve been in the hospital and five
different care centers. It’s like starting over every time.”
• A family caregiver: “Hospice was great. We couldn’t have done it
without them. But all of a sudden they took over and said, ‘You can be the
family now.’ I felt like our years of caregiving were invisible.”
• A son caring for his father at home: “The only time I felt out of control
of my dad’s care was when we went into the hospital.”
• A surgeon at Abbott Northwestern: “How can we reclaim the heart of
medicine?”
AIM
As I live well with serious illness, I am in charge.
You listen to me, help me, guide me,
honor me, and support me as a person.
Relationship based patient centered support across
care settings in the last years of life will prove to
reliably honor and respect patient goals and wishes,
improve quality of life, enhance the care experience
and reduce unwanted or unnecessary care.
relationship + story
Relationship
as how to do work
STORY
Relationship
as result of work
THE WORK_domains
Culture
THE WORK_Guiding Principles
THE MODEL_Active Ingredients
Patient & Caregiver Outcomes
Patient
Outcomes
Patient Goals &
Wishes Honored
Patient
Quality of Life
Patient Experience
Patient
Experience
Caregiver
Outcomes
Primary
Caregiver
Quality of Life
Primary
Caregiver
Experience
Secondary
Caregiver
Quality of Life
Care Team Outcomes
& Process Evaluation
Care Team
Wellbeing
Care Team Activity
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System Outcomes
Hospice Enrollment
Hospice Days
Inpatient Days
Total Cost of Care
How Will We Do This?
 The LifeCourse non-clinical care guide establishes an
ongoing, personal relationship to hear the life story and
understand goals of living.
 The team supporting the care guide helps to maintain
focus on the whole person, so that non-medical as well
as medical goals are established and supported.
 The care guide partners with patients and caregivers to
get the right support from within Allina, from their
community, and from the family’s own strengths and
assets.
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Care guide vs Team
Shared relationship
• The team shares a
connection with the
patient.
• The care guide
provides continuity over
time; the clinicians
provide focused
expertise.
• Therapeutic
relationship (care
guide) is not the same
as Therapy (clinician).
PCP
RN
Chaplain
SW
Care guide
M&FT
Pharmacy
Participant
and
Caregivers
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The LifeCourse Model
• The team for 300-500 patients:
–
–
–
–
–
–
9 care guides
An RN
A Social Worker
A Marriage and Family Therapist
A Chaplain
A Pharmacist
• Care Guides
– Two years of post-secondary education
– Experience in loss or caregiving
– Good communication skills
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Team: Skills and Licenses—
Weighted in favor of a common set of interpersonal skills
•
•
–
–
•
•
•
•
•
•
•
•
•
Assessment
Advance Planning
Shared decision making
Advance Care Planning
Communication
Coordination
Team Dynamics
Cultural understanding
Critical thinking and clinical
judgment
Facilitator of learning
Process Improvement
Systems thinking
Common
Knowledge
Base
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Discipline-specific
competencies
DisciplineSpecific
skills
What are the training concepts and foundations?
Training  Patient Care
Tending to suffering,
soul & resilience
Advance Planning
(ACP/SDM)
Domains of
Personhood
Story review
Adaptive Practices
Coordination
/ follow up
 enhance &
support
Relationship
Story
Validation and
planning
Understand
strengths &
resources
Communication/
Narrative
Interviewing
Late Life Adaptive Practice
Based on Heifeitz, R. and Limky, M. Leadership on the line. Harvard Business School Press. Boston, MA, 2002, page 108.
DISTRESS!
Tension of Change
Limit of tolerance
Patient and
families
productive range
of adaptation,
engagement and
coping.
Threshold of learning
DISTRESS!
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Time
A Life’s Journey
• Chuck was 81 years old: a father,
a veteran, a man of strong faith.
• He was an engineer who loved to
golf, fish, and work in his
woodshop.
• He died at home of heart failure
12 years after a kidney transplant.
• In his last year of life, Chuck and
his wife faced many challenges.
Aortic Stenosis
Pulmonary Hypertension
Renal Failure
Recurrent Pneumonia
• Weight loss, weakness, fatigue, fluid retention, shortness of breath,
anxiety, depression, insomnia, anticoagulation, general malaise, osteoarthritic pain.
• Hospitalization  Comfort care vs limited intervention vs full treatment
• Shortness of breath Oxygen & morphine versus Diuresis renal failure
vs heart failure.
• Fluid retentions Peritoneal versus hemo dialysis
• Anemia Procrit; Iron infusions
• Malnutrition  upper GI
Low
adaptation
Burden of illness
High
ACP OR SDM?
Illness
TIME
Death
Advance
Planning
Shared
Decision
Making(SDM)
Advance Care
Planning(ACP)
•
•
•
•
•
Patient Centered
Individualized
Whole person
Decision Making
Goals, values
and preference
dependent
Shared
Decision
Making
Advance
Planning
Advance Care
Planning
Advance
Planning
•
•
•
•
Shared
Decision
Making
Present
Specific Decision
Multiple Choices
Life or treatment
options
• Change in goals,
prognosis, health
status, support,
medical plan
• Collaborative
Conversation
Advance Care
Planning
Advance
Planning
• Future
• Surrogate decision
making
• Unplanned
Complications
• Planning for bad
Shared
outcomes
Decision
• Change
in goals,
prognosis,
health
making
status, support,
medical plan
Advance Care
Planning
Advance Care Planning is …
• Discussion to understand and
• Document Goals, values and
treatment wishes into an
advance directive document.
• Communicate to others verbally
and in medical record the most
recent documentation and
discussion.
Hospital Admission
Change in Condition
Care Transition
clarify goals, values and wishes
and decide on treatment options.
Function
Life Course of Advance Care Planning
Prevention-Wellness-Illness Management-Acute Care-End of Life
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Function
Basic Planning all adults
Basic HCD
completion
ID Health
care agent
Clarify goals
values
Treatment
wishes
Neurological
injury
Prevention-Wellness-Illness Management-Acute Care-End of Life
Life Course of Advance Care Planning
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Life Course of Advance Care Planning
Basic Planning all adults
Function
Disease Specific Planning
Any Age-progressive illness
Facilitator, Patient, Proxy
90 minutes
Individualized
Goals of care
Unplanned complications,
“bad” outcomes
Prevention-Wellness-Illness Management-Acute Care-End of Life
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Life Course of Advance Care Planning
Function
Basic Advance Care Planning
Disease Specific
End of Life – 6-12 mos to live
POLST
Hospice
Medical
/LTC
Order Set
Specific
Treatments
Prevention-Wellness-Illness Management-Acute Care-End of Life
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adaptation
Burden of illness
Disease
Specific ACP
Low
High
POLST
Basic ACP
Patient’s Journey ACP vs. SDM
Illness
TIME
Death
Advance
Planning
•
•
•
•
Shared
Decision
Making
Present
Specific Decision
Multiple Choices
Life or treatment
options
• Change in goals,
prognosis, health
status, support,
medical plan
• Collaborative
Conversation
Advance Care
Planning
Decisional Conflict
Signs & Symptoms
 Concerned about “bad results”
 Wavering between choices
 Delaying decision
 Questioning what is important
 Distressed/tense
 Preoccupied with decision
“A state of uncertainty about the course of action
to be taken when choice among competing
actions involves risk, loss, or challenge to
personal values.”
Common goals at the end of life
•
•
•
•
•
•
Be cured
Live longer
Maintain function/quality of life/independence
Be comfortable
Achieve life goals
Provide support for family and caregiver
Goals toward the end of life: A structured review. Kaljian et al., 2009
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Medication
High
Hospital
Hospital
Clinic visits
Clinic visits
Dialysis, Tests
& Procedures
Comfort Care
vs. Hospital
Dialysis, Tests
& Procedures
Disease
Specific ACP
adaptation
Hospital
Low
Burden of illness
POLST
Basic ACP
ACP AND SDM
Illness
TIME
Death
Clinic visits
Hospital
Low
Disease
Specific ACP
Depression
Illness
TIME
Shortness of Breath
Dialysis, Tests
& Procedures
Hospital
Fluid retention
adaptation
Clinic visits
Insomnia
Dependence
Burden of illness
High
Hospital
Anorexia
Nausea
POLST
Basic ACP
ACP AND SDM
Comfort Care
vs. Hospital
Dialysis, Tests
& Procedures
Death
Dialysis, Tests
& Procedures
Hospital
Depression
Move to
Asst. living
No longer
driving
Illness
TIME
Shortness of Breath
Adaptation
Clinic visits
Disease
Specific ACP
High
Hospital
Anorexia
Nausea
Medication
Insomnia
Hospital
Clinic visits
Fluid retention
Burden of illness
Caregiving
help
Sell House
Dependence
Low
help
POLST
Basic ACP
ACP AND SDM
Caregiving
Comfort Care
vs. Hospital
Dialysis, Tests
& Procedures
Death
LifeCourse Collaborative Conversations
(communication and relationship)
Paternalistic
Conversations
Shared
Decision
Making
Autonomous
Conversations
(Clinician)
Conversations
(Person)
(dyad activity)
Shifting
41 from Shared to Collaborative Decision Making: A Change in Thinking and Doing (O’Grady & Jadad, 2010)
LifeCourse Team ACP/SDM Cues
Assessment
and Plan
Team Roles and
Responsibilities
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• SDM Cues – intensity and urgency
• New or changed diagnosis
• Change in roles or responsibilities
• Change in care setting or living situation
• Change in functional and cognitive status
• Change in treatment plan
• Chang in support system
• Facilitator/Guide
• Communicator
• Navigator/Coordinator
• Coach
• Informer/Educator
• Advocate/Advisor
Decision
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Goal
Summary
Best Practice Late Life Care
• Relationship continuum
based care
- Patient Driven
• Honoring patient goals,
values and wishes
- ACP
• Empower, Engage & Activate
- SDM
• Proactive Support
- Strength, Assets and Gaps
• Best Practice Standards
Education and Training
Improve Care experience and Quality
of life
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Thank you
Sandy Schellinger
612-262-1444
sandra.schellinger@allina.com
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