approach to late-life care in the community Sandy Schellinger, MSN, - - PowerPoint PPT Presentation

LifeCourse: An innovative approach to late-life care in the community

Sandy Schellinger, MSN, NP-C, Senior Research Scientist Wednesday, September 9, 2015

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LifeCourse

TM: An innovative approach

to late-life care in the community

Eric Anderson, MD, Principal Investigator Sandy Schellinger, MSN, NP-C, Senior Research Scientist Heather Britt, MPH, PhD, Director, Division of Applied Research

Learning Objectives

• List the key activities of a lay healthcare worker providing patient-

centered and family-oriented care to individuals with advanced serious illness.

• Describe potential successes and barriers to lay healthcare workers

supporting the palliative care experience.

• Describe how intentional late life support several years before

death impacts quality of life, care experience, utilization of resources and the health system’s ability to honor and respect individual wishes.

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Allina Health

• Allina Health is a not-for-profit network of hospitals, clinics and
• ther health care services, providing care throughout Minnesota

and western Wisconsin

– 13 Hospitals – 90+ Clinics – 29 Rehabilitation locations – 16 Retail pharmacy sites – Specialty care centers – Specialty medical services that provide home care, senior transitions, hospice care, home oxygen and medical equipment – Emergency medical services

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7 out of 10 Americans will die from serious illness with an end-of- life period that can be drawn out over years, not just weeks or months. Too often, serious illness care is fragmented and doesn’t support our nonmedical needs. With limited resources and pressure to reduce healthcare spending, we have an opportunity to make sure we are spending

• ur healthcare dollars as

wisely as possible – on the care that matters most to individuals.

Serious Illness Care Today

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The Felt Experiences of Care

• A 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 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 Hospital: “How can we reclaim

the heart of medicine?”

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An Opportunity

What if those of us in the later stages of life had someone to help guide us through the maze of social support and healthcare choices, and understand how these choices could support that most fundamental of questions:

What matters most?

“…our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”

–Atul Gawande, Being Mortal: Medicine and What Matters in the End

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LifeCourse

LifeCourse is a late life supportive care approach that helps individuals and families navigate serious illness. It is part of a system strategy for addressing complex, serious illness so that we can be more responsive as a health system to the things that matter most to our patients.

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2012 2013 2014 2015 2016 – 2020

Pilot Phase Research and Program Development Program Expansion and Community Impact

• Develop model
• Enroll 23 patients
• Enroll and study

1200 patients plus family members and comparison patients

• Develop program

evaluation

• Test model with early

adopters

• Integrate LifeCourse across

Allina Health

• Public engagement around

late life care issues

• Pursue government policy

and reimbursement agenda

Timeline

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Key Components

Whole Person Care Care Guide Family- Oriented Approach What Matters Most

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• Target Population: individuals living with serious illness who may be

in the last two to three years of life

• Individuals living with serious illness are identified by multiple

factors present in the EHR:

– 1 or more chronic illnesses (Heart Failure, Kidney Failure, Liver Failure, COPD, Advanced Cancer, Dementia, Diabetes, Parkinson’s, Coronary Artery Disease) in an advanced stage – Comorbidity score > 4 – Allina Health provider and recent clinic or hospital encounter

• Potentially eligible individuals populate an electronic eligibility

report that is screened by a research nurse

Study Participants

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Care Team

• Care guides are trained lay healthcare workers who act as the

primary contact for the patients and families

• Care guides support a caseload of 45 patients
• A team of clinicians support the care guides

– Registered Nurse – Social Worker – Marriage and Family Therapist – Chaplain – Pharmacist

• Future State:

– Care guides will be integrated with primary and specialty based clinical teams

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Visit Approach

Care guides have monthly, in-person visits with patients and their caregivers. Care guides begin each visit by setting intention, discussing patient goals, and reviewing what matters most to the patients. Care guides then explore issues of importance using a semi-structured, whole person approach and assessment tools.

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Visit Approach

Set the stage Elicit chief concern and set agenda Open-ended questions and skills that encourage self-expression Focusing skills to learn: symptom story, personal context, and emotional context Transition Set intention Elicit goals and what matters most Question sets & assessments tools Further exploration Follow-up plan and next steps

Smith’s 5 Step Patient-Centered Interviewing Method LifeCourse Visit Approach

Semi-Structured Visit Framework

Visit #1 Visit #2 Visit #3 Visit #4 Visit #5 Visit #6 On-going

Set Intention What Matters Most/Goals Question Sets Physical Social Cultural Financial & Legal Revisit and Update Question Sets Revisit and Update Question Sets Revisit and Update Question Sets Psychological Cultural Spiritual Family Legacy Care at End

• f Life

Assessment Tools Physical Physical Ethical Visit 1 Re- assessment: Physical Visit 2 Re- assessment: Physical Care at End

• f Life

Revisit Assessments Social Financial & Legal Further Exploration and Validation Follow-up Plan and Next Steps Supplemental Visits: Advance Care Planning, Supportive Care Conference

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Education and Training

• Foundational education for all team members includes building an

understanding of palliative care domains, goals, and what matters most

• Care guides receive relational training to build communication

techniques, develop healing presence, and ensure an understanding of professional boundaries

• Care guides are trained on LifeCourse’s semi-structured visit

protocol and provided with field guides to use when visiting patients

• Care guide skills validation is incorporated into the training as

LifeCourse moves from research into implementation

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Outcomes

Participant Outcomes

Quality of Life1 Experience3 Goals honored

Caregiver Outcomes

Quality of Life2 Experience3

System Outcomes

Care Team wellbeing4 Hospice Days Hospital Days Emergency Visits Total Cost of Care

• 1. FACIT-PAL (Functional Assessment of Chronic Illness Therapy - Palliative Care)
• 2. PROMIS-29 (Patient Reported Outcome Measurement Information System)
• 3. LifeCourse Experience tool
• 4. Maslach Burnout Inventory

Goal: maintain patient & family quality of life while decreasing overall cost

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Participant Outcomes

Measure Hypothesis Early Results

Quality of Life LifeCourse participants quality of life will remain stable or decrease at a slower rate than patients receiving usual care.

+

(Social, Emotional, Palliative, Total) Experience LifeCourse participants will have more positive care experiences than patients receiving usual care.

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(Goals, Unanswered Questions, Trust, Global - Support, Total) Goals Exploratory: To understand patient goals late in life. Patients prioritize both medical and nonmedical goals.

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Caregiver Outcomes

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Measure Hypothesis Result

Quality of Life Quality of life for caregivers participating in LifeCourse will remain stable or decrease at a slower rate than caregivers

• f patients receiving usual care.

+/-

(Anxiety, Global - Health) Experience Caregivers participating in LifeCourse will have more positive experiences as compared to caregivers of patients receiving usual care.

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(Unanswered Questions, Social/Emotional, Global - Support)

System Outcomes

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Measure Hypothesis Early Results

Palliative Care Utilization LifeCourse participants utilize community and inpatient palliative care services more frequently than patients receiving usual care.

+

Inpatient Days LifeCourse participants will have fewer inpatient days than participants receiving usual care.

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Advance Directive LifeCourse participants will have increased advance directive completion compared to patients receiving usual care.

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Hospice Enrollment LifeCourse participants will choose to enroll in hospice at an increased rate compared to patients receiving usual care.

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ED Visits LifeCourse participants will utilize the ED less frequently than patients receiving usual care. No difference. Total Cost of Care LifeCourse participants will have lower total cost of care than patients receiving usual care.

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Qualitative Data: Patient Perspective

• “After they put me on blood thinners and I was trying to cut my toenails, I

cut too deep and couldn’t stop the bleeding and went to the emergency room, where it took them 2 ½ hours to stop the bleeding, and (my care guide) put me in touch with people who will cut my toenails for me and I can see where they’re working and have the right tools and won’t cut me (laughs), and things like that.” – DB

• “Because of [my care guide], I was able to say ‘why do I need to do it?’

and actually feel like I had some control over my treatment.” - DM

• [Our care guide] “has really brought my husband out to be free in his

discussion of the cancer and everything. At one point, he refused to discuss it, period, which kind of made me feel like I was alone in it.” – IL

• “I was very suspicious in the beginning of this...but I found that somebody

cared about how I was doing each day. It has incredibly changed everything. It has changed...the way doctors treat me. It has changed so many pieces of the puzzle. It has changed the fact that I was alone here, and everybody was so busy...” - BK

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Qualitative Data: Patient Perspective

Funding

• Current State

– The LifeCourse research study is funded by the Robina Foundation

• Future State

– The LifeCourse approach will be funded by a combination of foundation and health system support – Anticipate coverage by risk based contracts following full implementation of the approach

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Challenges

• Balancing the complexity of late life against the need for simplified

deployment

• Structural and cultural barriers to accessing healthcare in late life
• Going from minimal patient caseload to scale

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Successes

• Integrated best practices and a whole person approach to create a

semi-structured protocol that can be performed by a lay healthcare worker

• Innovation through group processes
• Early results indicate that this approach supports quality of life and

improves service utilization

• Alignment with national movements and publications such as the

IOM Report “Dying in America” and Atul Gawande’s “Being Mortal”

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• One article published in the American Journal of Hospice and

Palliative Medicine, with several other manuscripts in progress

• Presentations at 11 conferences in 2015, including a symposium at

the Gerontological Society of America Annual Scientific Meeting

• One presentation confirmed for 2016 at American Academy of

Hospice and Palliative Medicine

• Eight late life documentaries broadcast on Twin Cities Public

Television

Dissemination

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• Fortin AH, Dwamena FC, Frankel RM, Smith RC. Smith’s Patient-Centered Interviewing;

An Evidence-Based Method. 3rd ed. New York, NY: McGraw-Hill Companies, Inc.

• Gawande A. Being Mortal; Medicine and What Matters in the End. New York, NY:

Metropolitan Books, 2014.

• National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for

Quality Palliative Care, Third Edition. Published 2013.

• National Quality Forum. A National Framework and Preferred Practices for Palliative

and Hospice Care Quality: A Consensus Report. Published 2006.

• RAND Corporation. Redefining and Reforming Health Care for the Last Years of Life.

http://www.rand.org/pubs/research_briefs/RB9178/index1.html. Published 2006.

• Schellinger S, Cain CL, Shibrowski K, Elumba D, Rosenberg E. Building New Teams for

Late Life Care: Lessons from LifeCourse. American Journal of Hospice & Palliative

• Medicine. 2015: 1049909115574692.

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References

Questions and Comments

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