LifeCourse: An innovative approach to late-life care in the community Sandy Schellinger, MSN, NP-C, Senior Research Scientist Wednesday, September 9, 2015 1
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. 3
Allina Health • Allina Health is a not-for-profit network of hospitals, clinics and other 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 4
Serious Illness Care Today 7 out of 10 Americans Too often, serious illness With limited resources and will die from serious care is fragmented and pressure to reduce illness with an end-of- doesn’t support our healthcare spending, we life period that can be nonmedical needs. have an opportunity to drawn out over years, make sure we are spending not just weeks or our healthcare dollars as months. wisely as possible – on the care that matters most to individuals. 5
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?” 6
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 7
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. 8
Timeline 2012 2013 2014 2015 2016 – 2020 Research and Program Program Expansion and Pilot Phase Development Community Impact • • • Develop model Enroll and study Test model with early 1200 patients plus adopters • Enroll 23 patients family members and • Integrate LifeCourse across comparison patients Allina Health • Develop program • Public engagement around evaluation late life care issues • Pursue government policy and reimbursement agenda 9
Key Components Whole Family- What Care Person Oriented Matters Guide Care Approach Most 10
Study Participants • 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 11
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 12
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. 13
Visit Approach Smith’s 5 Step Patient -Centered LifeCourse Visit Approach Interviewing Method Set the stage Set intention Elicit goals and what matters most Elicit chief concern and set agenda Open-ended questions and skills that Question sets & assessments tools encourage self-expression Focusing skills to learn: symptom story, Further exploration personal context, and emotional context Transition Follow-up plan and next steps
Semi-Structured Visit Framework Visit #1 Visit #2 Visit #3 Visit #4 Visit #5 Visit #6 On-going Set Intention What Matters Most/Goals Physical Social Cultural Financial & Revisit and Revisit and Revisit and Legal Update Update Update Question Sets Question Sets Question Sets Question Sets Psychological Cultural Spiritual Family Legacy Care at End of Life Assessment Tools Physical Physical Ethical Visit 1 Re- Visit 2 Re- Care at End Revisit assessment: assessment: of Life Assessments Physical Physical Social Financial & Legal Further Exploration and Validation Follow-up Plan and Next Steps Supplemental Visits: Advance Care Planning, Supportive Care Conference 15
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 16
Outcomes Goal: maintain patient & family quality of life while decreasing overall cost Participant Outcomes Caregiver Outcomes Quality of Life 1 System Outcomes Experience 3 Quality of Life 2 Experience 3 Care Team wellbeing 4 Goals honored 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 17
Participant Outcomes Measure Hypothesis Early Results + LifeCourse participants quality of life will remain stable or decrease at a (Social, Emotional, Quality of Life slower rate than patients receiving Palliative, Total) usual care. + LifeCourse participants will have more (Goals, Unanswered Experience positive care experiences than patients Questions, Trust, receiving usual care. Global - Support, Total) Patients prioritize both Exploratory: To understand patient Goals medical and goals late in life. nonmedical goals. 18
Caregiver Outcomes Measure Hypothesis Result +/- Quality of life for caregivers participating in LifeCourse will remain stable or (Anxiety, Global - Quality of Life decrease at a slower rate than caregivers Health) of patients receiving usual care. + Caregivers participating in LifeCourse will (Unanswered have more positive experiences as Questions, Experience compared to caregivers of patients Social/Emotional, receiving usual care. Global - Support) 19
System Outcomes Measure Hypothesis Early Results LifeCourse participants utilize community and Palliative Care + inpatient palliative care services more frequently Utilization than patients receiving usual care. LifeCourse participants will have fewer inpatient + Inpatient Days days than participants receiving usual care. LifeCourse participants will have increased advance + Advance Directive directive completion compared to patients receiving usual care. LifeCourse participants will choose to enroll in + Hospice Enrollment hospice at an increased rate compared to patients receiving usual care. LifeCourse participants will utilize the ED less ED Visits No difference. frequently than patients receiving usual care. LifeCourse participants will have lower total cost of + Total Cost of Care care than patients receiving usual care. 20
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