LifeCourse: An Innovative Approach to Late Life Care in the Community
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Eric Anderson, MD, Principal Investigator
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LifeCourse: An Innovative Approach to Late Life Care in the Community
- 1. LifeCourseTM : An innovative approach to late life care in the community Eric Anderson, MD, Principal Investigator Allina Health September 29, 2015
- 2. Disclosure There are no conflicts of interest or relevant financial interests in making this presentation. I have indicated that my presentation does not include discussion of an unlabeled use of a commercial product, or an investigational use not yet approved for any purpose. 2
- 3. 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 how late life support several years before death impacts - Quality of life for patients, - The experience of care for families, - Use of hospital and hospice in the last 6 months of life - Completion of advance directives, and - Total cost of care 3
- 4. 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 our healthcare dollars as wisely as possible – on the care that matters most to individuals. Serious Illness Care Today 4
- 5. Home & Community HospitalsService Lines & Specialties Clinics Allina Health Impact 5 • Individuals living with serious illness touch all parts of Allina Health. • They interact with multiple providers in different settings in order to manage their increasingly complex care.
- 6. 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
- 7. An Opportunity “…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
- 8. 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
- 9. Timeline 9 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 over 1500 patients plus family members and comparison patients • Develop program evaluation • Test model with early adopters • Integrate LifeCourse across Allina Health • Promote public engagement around late life care issues • Pursue government policy and reimbursement agenda
- 11. Identified by multiple factors in the EHR Screened by a research nurse Target Population Study Participants 11 Recent clinic or hospital encounter 1 or more chronic illnesses in an advanced stage Allina Health provider Comorbidity score ≥ 4 Electronic eligibility report Individuals living with serious illness who may be in the last two to three years of life
- 12. Visit Approach Care guides have monthly, in-person visits with patients and their caregivers. Care guides discuss patient goals, and they review what matters most. In their Excellian notes, care guides reflect the whole person. 12
- 13. Implementing Whole Person Care 13 Visit #1 Visit #2 Visit #3 Visit #4 Visit #5 Visit #6 On-going QuestionSets Physical Social Cultural Financial & Legal Revisit and Update Questions Revisit and Update Questions Revisit and Update Questions Psychological Cultural Spiritual Family Legacy Care at End of Life Assessments Physical Physical Ethical Reassess- ment: Physical Reassess- ment: Physical Revisit Assessments Social Financial & Legal Supplemental Visits: Advance Care Planning, Supportive Family Conference
- 14. Implementing Whole Person Care 14 Visit #1 Visit #2 Visit #3 Visit #4 Visit #5 Visit #6 On-going QuestionSets Physical Social Cultural Financial & Legal Revisit and Update Questions Revisit and Update Questions Revisit and Update Questions Psychological Cultural Spiritual Family Legacy Care at End of Life Assessments Physical Physical Ethical Reassess- ment: Physical Reassess- ment: Physical Revisit Assessments Social Financial & Legal Supplemental Visits: Advance Care Planning, Supportive Family Conference
- 15. Implementing Whole Person Care 15 Visit #1 Visit #2 Visit #3 Visit #4 Visit #5 Visit #6 On-going QuestionSets Physical Social Cultural Financial & Legal Revisit and Update Questions Revisit and Update Questions Revisit and Update Questions Psychological Cultural Spiritual Family Legacy Care at End of Life Assessments Physical Physical Ethical Reassess- ment: Physical Reassess- ment: Physical Revisit Assessments Social Financial & Legal Supplemental Visits: Advance Care Planning, Supportive Family Conference
- 16. 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 16
- 17. 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. + Experience LifeCourse participants will have more positive care experiences than patients receiving usual care. + Goals Exploratory: To understand patient goals late in life. Patients prioritize both medical and nonmedical goals. 17
- 18. Caregiver Outcomes 18 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 of patients receiving usual care. +/- (+ for Anxiety and Global - Health) Experience Caregivers participating in LifeCourse will have more positive experiences as compared to caregivers of patients receiving usual care. +
- 19. System Outcomes 19 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. Advance Directive LifeCourse participants will have increased advance directive completion compared to patients receiving usual care. Hospice Enrollment LifeCourse participants will choose to enroll in hospice at an increased rate compared to patients receiving usual care. ED Visits LifeCourse participants will utilize the ED less frequently than patients receiving usual care. Total Cost of Care LifeCourse participants will have lower total cost of care than patients receiving usual care.
- 20. • 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 • LifeCourse included in a presentation on HHS Delivery System Reform given by Senator Amy Klobuchar and Allina EVP Robert Wieland • Eight late life documentaries broadcast on Twin Cities Public Television Dissemination 20
- 21. • 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. 21 References
- 22. 22
- 24. eric.worden.anderson@allina.com In case you missed Speaking of Being Mortal: A Life Changing Conversation with Dr. Atul Gawande on September 18,watch the broadcast in November on Twin Cities Public Television. – Also available on www.lifecoursemn.org – Event sponsored by Allina Health and LifeCourse 24 To Contact Me
Editor's Notes
- In the time we are together today, I will give you an overview of our late life supportive care approach which is delivered by lay healthcare workers in collaboration with patients, providers and interdisciplinary teams. We will describe what it takes to successfully deliver this approach to support patients and families with serious illness over time and across the care continuum. We will also share our early results for care experience, quality of life and utilization of resources.
- The current state of serious illness care today is summarized nicely in a Rand Corporation report from 2006 titled “Redefining and Reforming Health Care for the Last Years of Life.” The authors noted that prognoses for patients near the end of life aren’t always clear. They also pointed out that because we can’t predict when patients are nearing their last few weeks, as opposed to their last few years, it doesn’t make sense to limit palliative care services to the period after curative care is stopped. We feel this distinct separation of curative and palliative medicine is an example of the fragmentation of care experienced by people living with serious illness. With limited resources available and pressure to reduce spending, we recognize the need to address these types of fragmentation and think about new ways to integrate medical and nonmedical approaches in healthcare. These issues: uncertain prognoses, fragmented care, and limited resources, are three of the main reasons we wanted to explore a new care approach for people living with serious illness.
- In developing this serious illness care approach, we talked to patients, families and clinicians about their experiences. I’ll give you moment to read these quotes. PAUSE The themes we saw surface in our focus groups and discussions included patients wanting to have a sense of feeling known, patients not wanting to have to repeat their story with each new provider, patients and families feeling in charge, and care team members requesting time and space to put relationship and whole person back into the model of care.
- We realized we had an opportunity to better support those living with serious illness, and we began with a question: 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? I want to give you a moment to read this quote from Atul Gawande’s new book Being Mortal. PAUSE Dr. Gawande highlights the need for new approaches to caring for individuals with serious illness - giving individuals the chance to shape their own story, define what is important to them, and receive care that aligns with their goals.
- LifeCourse is a late life supportive care approach. While we are currently transitioning into the program phase of development, for the past three years we have been conducting a research study to learn about how the approach impacts patients, families, and the healthcare system. The study is funded by a grant from the Robina Foundation, which aims to support innovative and transformative projects.
- LifeCourse is a multi year endeavor. We began with a pilot in 2012 in which we looked at a small subset of patients in long term care and the community, and then moved into a broader longitudinal cohort research study. To date, we have enrolled 1500 individuals in LifeCourse, 437 patients, 236 comparison patients, as well as family members in each group. Research participants will be followed through the end of 2016, as we transition from research to program integration across Allina Health. As we move towards value based payment systems we will be engaging with payers to develop a reimbursement model that supports a sustainable, long term program.
- The LifeCourse approach aligns with the National Quality Forum preferred practices and National Consensus Project guidelines. However, it is unique in the way principles have been integrated and operationalized. The LifeCourse has four key components. It builds upon an expanded set of palliative care domains and chronic illness care practices to promote whole person care. It includes a trained lay healthcare worker, called a care guide, who acts as the primary contact, following the patient across care settings and over time The care guide uses a family-oriented approach to understand needs, leverage strengths, and empower families to effectively support the individual living with serious illness. And the care guide asks patients and caregivers to articulate individualized goals and take part in decision-making.
- This care approach targets individuals and families living with serious illness. We have developed an electronic eligibility report which identifies individuals who have one or more chronic conditions, receive care from an health system provider and have a comorbidity score greater than 4 according to a combined comorbidity index. Our research RN uses a set of clinical indicators to screen potential individuals to reach out and offer enrollment.
- Care guides meet with patients and their families on a monthly basis. The frequency of these visits deepen the level of trust, allowing for a proactive approach to normalizing difficult conversations. The strength of the care guide role lies in their ability to provide an ongoing supportive relationship that exists outside the influence of the power differential that may be found in other healthcare settings. Attention to whole person care addresses both medical and nonmedical needs. LifeCourse ensures that we provide whole person care through a visit approach built around an expanded set of the NCP domains of palliative care and attention to what matters most to individuals.
- This visual of the semi-structured visit framework offers a more in depth view of how the approach operationalizes the domains of palliative care. After setting the intention of the visit the care guide moves to discussing what matters most to the patient and their goals. Discussing these up front allows the care guide to keep these factors in mind as they move further into the discussion. As you can see there are specific questions and assessments that care guides use to explore the palliative care domains. Assessment tools include standard measures such as the Edmonton Symptom Assessment System, Palliative Performance Scale, Mini-cog, and FICA Spiritual History Tool (faith, importance, community, address in care). Both the question sets and the assessments can open the door to conversations, and can also trigger follow up with a patient’s provider. After the sixth visit the use of question sets becomes more individualized, whereas the use of assessment tools are regularly scheduled.
- This visual of the semi-structured visit framework offers a more in depth view of how the approach operationalizes the domains of palliative care. After setting the intention of the visit the care guide moves to discussing what matters most to the patient and their goals. Discussing these up front allows the care guide to keep these factors in mind as they move further into the discussion. As you can see there are specific questions and assessments that care guides use to explore the palliative care domains. Assessment tools include standard measures such as the Edmonton Symptom Assessment System, Palliative Performance Scale, Mini-cog, and FICA Spiritual History Tool (faith, importance, community, address in care). Both the question sets and the assessments can open the door to conversations, and can also trigger follow up with a patient’s provider. After the sixth visit the use of question sets becomes more individualized, whereas the use of assessment tools are regularly scheduled.
- This visual of the semi-structured visit framework offers a more in depth view of how the approach operationalizes the domains of palliative care. After setting the intention of the visit the care guide moves to discussing what matters most to the patient and their goals. Discussing these up front allows the care guide to keep these factors in mind as they move further into the discussion. As you can see there are specific questions and assessments that care guides use to explore the palliative care domains. Assessment tools include standard measures such as the Edmonton Symptom Assessment System, Palliative Performance Scale, Mini-cog, and FICA Spiritual History Tool (faith, importance, community, address in care). Both the question sets and the assessments can open the door to conversations, and can also trigger follow up with a patient’s provider. After the sixth visit the use of question sets becomes more individualized, whereas the use of assessment tools are regularly scheduled.
- Our goal is to maintain quality of life of those living with serious illness and to decrease overall cost simultaneously. Outcomes for participants include quality of life, experience, and goals. For caregivers, quality of life and experience are measured. System outcomes include wellbeing of the care team, as well as more traditional measures around inpatient days, ED visits, hospice enrollment, and total cost. Patients and caregivers are surveyed every three months using standardized and validated tools for quality of life – FACIT-PAL for patients and PROMIS-29 for caregivers. We designed our own experience tool for patients and caregivers. Because most national experience tools like CAHPS focus on episodes of care or particular visits, we knew we needed to design a special instrument to capture the longitudinal experience of late life care. The LifeCourse tool focuses on experience across time and over settings and care teams. Care team members are also enrolled in the study to determine the level of care team well-being over the course of the project using the Maslach Burnout inventory.
- Early results are based on 6-months of data. We are currently reviewing 9 month data. Quality of life for patients: Comparison (or usual care) patients have lower QOL in all domains of the FACIT-Pal, approaching statistical significance for the Palliative Domain (p=0.079) and the Social and Emotional domains (p=0.13 and 0.11, respectively). In other words, patients enrolled in LifeCourse are maintaining quality of life while the quality of life for comparison patients is declining. Care experience for patients: Using the LifeCourse assessment tool, comparison patients have a consistently lower experience over time, although this trend is not yet statistically significant. The areas of ‘repeat myself,’ ‘goals’ and ‘trust’ are approaching significance. Goals: Our initial exploration of individual goals reveals that 39% of the time patients focus on medical issues and 61% of the goals focus on nonmedical needs. We also recognize that identifying and affirming patient’s goals and values are important whether these goals are achievable or not.
- Quality of life for caregivers: Comparison caregivers show increasing anxiety, as compared to intervention caregivers, over the first six months as assessed by the PROMIS-29, (p=0.049). ‘Global health’ scores are higher for intervention caregivers than comparison caregivers (p=0.10). Caregiver experience is generally more positive for those enrolled in the intervention as compared to those receiving usual care.
- Overall we see positive trends and some statistically significant differences in the type of utilization increases or decreases that we would like to see. More specifically, for palliative care utilization, completion of advance directives, and enrollment in hospice, we see an increase for patients enrolled in LifeCourse as compared to those patients in usual care. For inpatient days and total cost of care, we see a decrease for patients enrolled in LifeCourse as compared to those patients in usual care. We have yet to detect a difference in ED visits across groups. Palliative Care: We are seeing a doubling of access to palliative care for intervention patients Advance Directives: Completion of advance directives increased from 43 to 71% in the intervention patients, and from 54 to 59% in comparisons, (p < 0.001). ED visits: Among patients still living, ED visits fell from 1.59 to 1.05 in the intervention, while rising from 1.43 to 1.62 in comparisons, (p = 0.015). Patients who died had no change in visit frequency. Inpatient days: In the last six months of life, intervention patients spent a median of 19.3 days in the hospital, while comparisons spent 42.6 (p = 0.088). Hospice enrollment: Of patients who have passed away, 50% of intervention patients were admitted to hospice, compared to 40% for comparison patients. Total Cost of Care : Overall there was a 17% reduction in cost of care for selected services (inpatient hospital, ED, hospice, SNF) for intervention patients as compared to usual care patients.
- This year we had our first article published in the American Journal of Hospice and Palliative Medicine. We are also working on several manuscripts focusing both on the process of creating a new care approach and on research outcomes. We’ve also been actively presenting work at both regional and national conferences, and we’re excited to be preparing for a symposium at the Gerontological Society of America Annual Scientific Meeting this November. In addition to disseminating research results, we’ve also partnered with our local public television station to produce eight documentaries focusing on the late life experience.