objectives

LifeCourse: A Late Life Supportive Care Research Project

Sandy Schellinger, RN MSN NP-CCo-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.

All diag

noses

Spre

ad to

regio

nal hosp

itals/

clinics

Develop pati

ent selecti

on algo

rithm

Enro

ll 12 – 30 te

st pati

ents

Dx: Hear

t fail

ure, S

tage

3-4 cance

r,

Dementia

2012

Phase I: Design/build care model

2013 - 2014 2015 - 2017

Enro

ll and st

udy 250– 5

00 patien

ts

Estab

lish busin

ess m

odel

Phase II: Validation

6-Year Study Timeline

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?”

AIMAs 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 + storyRelationship as how to do work

Relationship as result of work

STORY

THE WORK_domains

Culture

THE WORK_Guiding Principles

THE MODEL_Active Ingredients

Patient & Caregiver Outcomes

Patient Experience

Care Team Outcomes & Process Evaluation

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Care Team Activity

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. 16

M&FT

Care guide vs TeamShared relationship

17

Care guide

Chaplain

Participant and

Caregivers

Pharmacy

SW

RN

• 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

• 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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The LifeCourse Model

• 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

Team: Skills and Licenses— Weighted in favor of a common set of interpersonal skills

Common Knowledge

Base

• Discipline-specific competencies

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Discipline- Specific

skills

What are the training concepts and foundations? Training Patient Care

Late Life Adaptive Practice

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Patient and families

productive range of adaptation,

engagement and coping.

Patient and families

productive range of adaptation,

engagement and coping.

Limit of toleranceLimit of tolerance

Threshold of learningThreshold of learning

Based on Heifeitz, R. and Limky, M. Leadership on the line. Harvard Business School Press. Boston, MA, 2002, page 108. Based on Heifeitz, R. and Limky, M. Leadership on the line. Harvard Business School Press. Boston, MA, 2002, page 108.

DISTRESS!

DISTRESS! TimeTime

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.

• Weight loss, weakness, fatigue, fluid retention, shortness of breath, anxiety, depression, insomnia, anticoagulation, general malaise, osteo-arthritic 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

Aortic StenosisPulmonary Hypertension

Renal FailureRecurrent Pneumonia

Aortic StenosisPulmonary Hypertension

Renal FailureRecurrent Pneumonia

ACP OR SDM?

Illness TIME Death

Lo

w

B

urd

en o

f ill

nes

s

Hig

h

adap

tati

on

• Patient Centered• Individualized• Whole person• Decision Making• Goals, values

and preference dependent

• Patient Centered• Individualized• Whole person• Decision Making• Goals, values

and preference dependent

• Present• Specific Decision• Multiple Choices• Life or treatment

options• Change in goals,

prognosis, health status, support, medical plan

• Collaborative Conversation





• Future• Surrogate decision

making• Unplanned

Complications• Planning for bad

outcomes• Change in goals,


• Future• Surrogate decision

making• Unplanned

Complications• Planning for bad

outcomes• Change in goals,


Advance Care Planning is …

• Discussion to understand and clarify goals, values and wishes and decide on treatment options.

• 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.

Hos

pita

l Adm

issi

on

Chan

ge in

Con

ditio

n Ca

re T

rans

ition

Hos

pita

l Adm

issi

on

Chan

ge in

Con

ditio

n Ca

re T

rans

ition

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Life Course of Advance Care Planning

Prevention-Wellness-Illness Management-Acute Care-End of Life

31Life Course of Advance Care PlanningPrevention-Wellness-Illness Management-Acute Care-End of Life

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Patient’s Journey ACP vs. SDM

Illness TIME Death

Lo

w

B

urd

en o

f ill

nes

s

Hig

h

adap

tati

on

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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ACP AND SDM

Illness TIME Death

Lo

w

B

urd

en o

f ill

nes

s

Hig

h

adap

tati

on

HospitalHospital

MedicationMedication

Comfort Care vs. Hospital


Dialysis, Tests & ProceduresDialysis, Tests & Procedures

HospitalHospitalClinic visitsClinic visits

HospitalHospital

Clinic visitsClinic visits


ACP AND SDM

Illness TIME Death

Lo

w

B

urd

en o

f ill

nes

s

Hig

h

adap

tati

on

HospitalHospital





Depression

Insomnia


HospitalHospital


ACP AND SDM

Illness TIME Death

Lo

w

B

urd

en o

f ill

nes

s

Hig

h

Ad

apta

tio

n

Move to Asst. living

Move to Asst. living

No longer driving

No longer driving

HospitalHospital

MedicationMedication




Caregiving help

Caregiving help

Sell HouseSell House


Depression

Anxiety

Insomnia


HospitalHospital


Caregiving help

Caregiving help

41Shifting from Shared to Collaborative Decision Making: A Change in Thinking and Doing (O’Grady & Jadad, 2010)

LifeCourse Team ACP/SDM Cues

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Summary Best Practice Late Life Care

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• 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 StandardsEducation and TrainingImprove Care experience and Quality of life

Thank you

Sandy Schellinger612-262-1444

[email protected]

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mailto:[email protected]

objectives

Documents

care experience

augustana care

care settings

unnecessary care

dads care

care guide partners

advance care planning

designbuild care model2013