Objectives

1. LifeCourse: A Late Life Supportive Care Research ProjectSandy Schellinger, RN MSN NP-CCo-Investigator Center for Healthcare Research and InnovationAllina Division of Applied Research

2. 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.

3. 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.

4. 6-Year Study Timeline Phase I: Design/build care model Phase II: Validation • Develop patient selection algorithm • Enroll 12 – 30 test patients • Dx: Heart failure, Stage 3-4 cancer, Dementia • Enroll and study 250– 500 patients • Establish business model • All diagnoses • Spread to regional hospitals/clinics 2015 - 2017 2012 2013 - 2014

5. 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?”

6. 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. 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.

8. relationship + story Relationshipas how to do work STORY Relationshipas result of work

9. THE WORK_domains Culture

10. THE WORK_Guiding Principles

11. THE MODEL_Active Ingredients

13. Patient & Caregiver Outcomes Patient Experience

14. Care Team Outcomes & Process Evaluation Care Team Activity Care Team Wellbeing

15. System Outcomes Hospice Enrollment Hospice Days Inpatient Days Total Cost of Care

16. 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.

17. 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 M&FT Care guide Pharmacy Participant and Caregivers

18. 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

19. Team: Skills and Licenses— Weighted in favor of a common set of interpersonal skills Common Knowledge Base Discipline- Specific skills Discipline-specific competencies • 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

20. What are the training concepts and foundations? Training  Patient Care

21. Late Life Adaptive Practice Based on Heifeitz, R. and Limky, M. Leadership on the line. Harvard Business School Press. Boston, MA, 2002, page 108. Tension of Change DISTRESS! Limit of tolerance Patient and families productive range of adaptation, engagement and coping. Threshold of learning DISTRESS! Time

22. 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. A Life’s Journey

23. Aortic Stenosis Pulmonary Hypertension Renal Failure Recurrent Pneumonia • 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

24. ACP OR SDM? Low Burden of illness High adaptation Illness TIME Death

26. Patient Centered • Individualized • Whole person • Decision Making • Goals, values and preference dependent

27. Present • Specific Decision • Multiple Choices • Life or treatment options • Change in goals, prognosis, health status, support, medical plan • Collaborative Conversation

28. Future • Surrogate decision making • Unplanned Complications • Planning for bad outcomes • Change in goals, prognosis, health status, support, medical plan

29. 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. Hospital Admission Change in Condition Care Transition

30. Function Life Course of Advance Care Planning Prevention-Wellness-Illness Management-Acute Care-End of Life

31. Function Life Course of Advance Care Planning Prevention-Wellness-Illness Management-Acute Care-End of Life

32. Function Life Course of Advance Care Planning Prevention-Wellness-Illness Management-Acute Care-End of Life

33. Function Life Course of Advance Care Planning Prevention-Wellness-Illness Management-Acute Care-End of Life

34. Patient’s Journey ACP vs. SDM Basic ACP POLST Low Burden of illness High adaptation Disease Specific ACP Illness TIME Death

35. Present • Specific Decision • Multiple Choices • Life or treatment options • Change in goals, prognosis, health status, support, medical plan • Collaborative Conversation

36. 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.”

37. 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

38. ACP AND SDM Basic ACP POLST Low Burden of illness High Medication Hospital Hospital Comfort Care vs. Hospital Clinic visits Clinic visits Dialysis, Tests & Procedures Hospital Dialysis, Tests & Procedures adaptation Disease Specific ACP Illness TIME Death

39. ACP AND SDM Anxiety Basic ACP Nausea Anorexia Pain POLST Insomnia Low Burden of illness High Hospital Hospital Comfort Care vs. Hospital Clinic visits Weakness Clinic visits Shortness of Breath Fluid retention Dialysis, Tests & Procedures Hospital Dialysis, Tests & Procedures adaptation Dependence Fatigue Depression Disease Specific ACP Illness TIME Death

40. ACP AND SDM Caregiving help Anxiety Basic ACP Nausea Anorexia Pain POLST Sell House Caregiving help Insomnia Low Burden of illness High Medication Hospital Hospital Comfort Care vs. Hospital Clinic visits Weakness Clinic visits Shortness of Breath Dialysis, Tests & Procedures Fluid retention Hospital Dialysis, Tests & Procedures Dependence Adaptation Depression Fatigue Disease Specific ACP Move to Asst. living No longer driving Illness TIME Death

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

42. LifeCourse Team ACP/SDM Cues

44. Summary Best Practice Late Life Care • Relationshipcontinuumbased 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

45. Thank you Sandy Schellinger 612-262-1444 sandra.schellinger@allina.com