Upstream Adventures: Initial results from a clinical trial of early palliative care, delivered in the community by trained lay persons Eric W. Anderson, MD Sandra E. Schellinger, RN, MSN, NP-C Division of Applied Research

2 The presenters have no relevant financial relationships. 2 Financial disclosure

3 Identify psychological, spiritual, social, and cultural aspects of patient care, and integrate support of those aspects of patient care into an overall plan of care. Develop patient plans of care that incorporate interdisciplinary assessments and symptom management across all domains of care that are ultimately based on the expressed values, goals, and needs of the patient and family. Identify opportunities to influence, initiate, maintain, and advance the practice and sustainability of palliative care within the changing healthcare environment. 3 Objectives

4 Serious Illness Care Today

55 What is LifeCourse? Pnc

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

Quality of Life

9 FACIT-Pal Dimensions DimensionDefinition Physical Well-BeingPhysical symptoms Social Well-BeingSocial support and communication Emotional Well-BeingMood and emotional response to illness Functional Well-BeingParticipation and enjoyment of normal daily activities PalliativeOverall quality of life, specifically for persons with advanced or life-limiting illness

10 FACIT-Pal Multivariate Analyses Domain # Intv. # Usual Care Beta (change compared to usual care) 95% CIP-Value Adj. R 2 (%) FACIT-Pal Total , Physical , Social , Emotional , Functional , Palliative , Six month change score models adjusted for baseline domain scores. Treatment group was coded dichotomously with the comparison group in the reference category. Controlled for age, gender, race, marital status, education, diagnosis, comorbidity score, and death after enrollment.

11 FACIT-Pal Total Trajectory Note: Adjusted using primary diagnosis standardization.

12 Domain Trajectory: Social Note: Adjusted using primary diagnosis standardization.

13 Domain Trajectory: Emotional Note: Adjusted using primary diagnosis standardization.

Care Experience

15 LifeCourse Experience Tool Dimensions DimensionDefinition Repeat Myself Care team listens and integrates medical and non-medical information Personal Care team understands personal circumstances and priorities Goals Goals of care are relevant and understood Unanswered Questions Questions about health, daily functioning, and how to proceed Frustration Frustration from confusion over advice, providers, and care Choice Care team supported patient-centered choices and helped to make right decision Trust Care team respected patient, centering on individuals goals and establishing trust Time Care team was available and spent adequate time with patient

16 Experience Multivariate Analysis Domain # Intv. # Usual Care Beta (change compared to usual care) 95% CIP-Value Adj. R 2 (%) Patient Experience Total , Repeat Myself , Personal , Goals , Unanswered Questions , Frustration , Choice , Trust , Time , Global – Care , Global – Support , Six month change score models adjusted for baseline domain scores. Treatment group was coded dichotomously with the comparison group in the reference category. Controlled for age, gender, race, marital status, education, diagnosis, comorbidity score, and death after enrollment.

17 Experience Total Trajectory Note: Adjusted using primary diagnosis standardization.

Resource Utilization

19 Utilization Outcome IRR for Treatment95% CIP-Value ED Visits , Inpatient Days , ICU Days , Models adjusted for prior utilization, gender, death during follow-up, baseline comorbidities, primary diagnosis, level of education, baseline location, inactivation during follow-up, and variable follow-up time.

20 Utilization

21 Palliative Care Intervention (N=429) Usual Care (N=262) Visit Type#Mean ± SDMinMax#Mean ± SDMinMaxP-Value Inpatient Palliative Care Visits MD/NP936.4 ± ± Social Work282.8 ± ± Spiritual182.6 ± ± Community-Based Palliative Care Visits Total87.4 ± ±

22 Hospice Utilization Prior to Death U.S. (N=2.6M) Allina (N=46,198) Intervention (N=129) Usual Care (N=52)P-Value Overall, % Heart Failure Cancer Dementia LOS, median days All data are percent unless otherwise indicated. NHPCO estimates are for the 2013 calendar year. Allina EHR estimates are for patients with any hospice admission and a date of death in 2013 or later.

23 Research Outcomes MeasureEarly Results PATIENT & FAMILY OUTCOMESParticipantCaregiver Quality of Life ++/- Experience ++ SYSTEM OUTCOMES Palliative Care Utilization  ED Visits  Inpatient Days  Advance Directives  Hospice Enrollment 

25 Key Components

26 Expanded Palliative Care Domains NCP Palliative Care domain nameLifeCourse domain name Structure and processes of careNot included as a domain Physical aspects of carePhysical domain Psychological and psychiatric aspects of carePsychological domain Social aspects of careSocial domain Family/Caregiver domain Cultural aspects of careCultural domain Spiritual, religious, and existential aspects of care Spiritual domain Legacy/bereavement domain Care at the end of lifeEnd of life domain Ethical and legal aspects of careEthical domain Financial/legal domain

28 Palliative care domains, goals, and what matters most Relational training to build communication techniques, develop healing presence, and ensure an understanding of professional boundaries LifeCourse semi-structured visit framework and field guides Skills validation Care Guide Training

29 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.

30 Semi-Structured Visit Framework Visit #1Visit #2Visit #3Visit #4Visit #5Visit #6On-going Set Intention What Matters Most/Goals Question Sets PhysicalSocialCulturalFinancial & Legal Revisit Question Sets PsychologicalCulturalSpiritual FamilyLegacy Care at End of Life Assessment Tools Physical SpiritualRevisit Physical Ethical Revisit Physical Care at End of Life Revisit Assessment Tools Further Exploration and Validation Follow-up Plan and Next Steps Supplemental Visit: Advance Care Planning

31 Goals

32 Physical Domain Topic 1: Understanding of one’s illness Topic 2: Symptoms and comfort Topic 3: Functional status and safety Edmonton Symptom Assessment System (ESAS) Palliative Performance Scale (PPS) ESAS symptom scores >5 10% change in PPS score New symptoms or medical concerns Alert patient’s provider team

33 Ethical Domain Topic 1: Recognize and validate goals and preferences based upon current state of health Topic 2: Recognize when decision-making capacity is impaired or possibly impaired Advance Care Planning Mini-Cog TM Patient goals conflict with medical plan of care Scoring of Mini-Cog TM Connect with patient’s provider team

34 Community LifeCourse Spread – 2016 Specialty Clinics Primary Care Clinics

Thank You! Questions? Sandra Schellinger Eric Anderson