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Community-Based Model Programs for the Seriously Ill May 2017 Prepared for the Gordon and Betty Moore Foundation by Kathleen Kerr 1 Community-Based Model Programs for the Seriously Ill Community-Based Model Programs for the Seriously Ill Research and analysis prepared by Kathleen Kerr May 2017 Executive Summary For decades providers and financers of health care have experimented with approaches to improving care delivered to individuals with serious illness, defined as those who have a poor prognosis and are likely in the last stage of life, experience functional impairment, and are at risk for cycling in and out of the hospital. The goal of this project was to identify examples of programs that are serving seriously ill individuals, and to gather information about how those programs are structured, staffed and financed. For the current purpose, we held that a serious illness program (SIP) would include the following essential components: Team-based approach: services delivered by an interdisciplinary team of professionals; Goal-based approach: care is centered on patient goals, which are documented in a care plan; Comprehensive care: access to curative care, disease-management, palliative care, and social supports; Coordinated services: among providers, across settings and over time; Transition supports: including timely transfer of information about patient goals and preferences; Accessible services: including during nights and weekends, to address crises and urgent needs; Concordant care: delivered services are aligned with patient values, goals and preferences; Home-based care: services and supports that promote care delivery in the home; Family-oriented care: structures and processes that provide a central role for family caregivers; Caregiver support: assessment of and attention to caregiver coping and needs; Measurement: an organized, comprehensive approach to assessing the quality of care. We used a layered approach to find model programs. We sent inquiries to dozens of individuals with expertise in palliative care, geriatrics, health services research and similar fields who would likely have knowledge of serious illness programs. We reviewed programs that had been recognized by the American Hospital Association’s Circle of Life Award, as well as programs described at national meetings that focus on palliative care, hospice care and advanced illness care. We considered programs that participated in demonstration projects aimed at improving care for seriously ill individuals, such as the Independence at Home program, and reviewed documents describing innovative approaches to advanced illness care / community-based palliative care developed by advocacy groups and trade organizations. Finally, we reviewed recent editions of peer-reviewed journals that focus on serious illness care, such as the Journal of Palliative Medicine and the Journal of the American Geriatrics Society. From among the hundreds of programs that were identified1 we selected 12 that completely or mostly offer the essential components of serious illness care, and whose successes and challenges appear to be representative of broader trends for further study. All are caring for at least 200 patients a year and have been operational for at least two years. In addition to seeking geographic diversity, we selected programs that were built off of a range of “bases” – such as health systems, hospices and medical groups – and that 1 As a companion to this report, we created a list that includes information on 100 programs offer some or all of the essential serious illness program components. 2 Community-Based Model Programs for the Seriously Ill are integrated with or dependent on a range of financing and care delivery models such as Medicare Advantage plans and Accountable Care Organizations. Case studies for 8 of the 12 are included below, following discussion of information gathered for all 12. 12 Model Serious Illness Programs Organization and Program Name Base (notable feature) State(s) University of Alabama Birmingham Health System Alabama Center for Palliative and Supportive Care (program in south central United States) Palo Alto Medical Foundation Medical Group California Palliative Care and Support Services (cross-setting teams) Sharp HealthCare Health System California Transitions (Medicare Advantage population) The Denver Hospice Hospice Colorado Optio Health Services (partnership with integrated health system) UnityPoint Health Health System Iowa / Illinois UnityPoint at Home (collaboration with the health system’s / Wisconsin Population Health programs) Hackensack Meridian Health Health System New Jersey Meridian Care Journey (integration across a complex system) ProHealth Medical Group New York ProHEALTH Care Support (services for an ACO population) Four Seasons Compassion for Life Hospice North Community Palliative Care (regional integration) Carolina Lehigh Valley Health Network Health System Pennsylvania Optimizing Advanced Complex Illness (coordination with social service programs) Support (OACIS) Virginia Commonwealth University Health Health System Virginia System (health home for complex patients) Center for Advanced Health Management Harborview Medical Center (University of Health System Washington Washington) (services in a safety-net system) Palliative Care Services Yakima Valley Memorial Hospital Health System Washington Compass Care (program in a rural area) For each serious illness program we interviewed and solicited written information from clinical and / or administrative leaders that described each program’s strategy for delivering the core components of serious illness care. We asked leaders about factors that promoted the development and sustainability of their programs, as well as factors that challenged their success. We also sought their input on resources that would help to promote development of similar services or enhance the sustainability, quality or 3 Community-Based Model Programs for the Seriously Ill growth of their own services. Though the profiled programs are quite diverse, interviews revealed a number of common themes. Success factors: Most informants noted the importance of internal and external partnerships. Relationships with community and national philanthropic organizations, as well as partnerships with researchers (within or external to their organizations) were often instrumental in launching or sustaining programs. Hospice-sponsored programs noted the importance of learning how to partner with health systems and payers. Internal partnerships, such as embedding programs in cancer centers or leveraging system-wide efforts related to advance care planning, were also identified as success factors. For health system programs in particular, supportive organizational leadership was felt to be critical. Efforts to support care team members through education, mentorship programs for new providers, and team wellness programs were all listed as mechanisms for nurturing clinical teams, maintaining morale and preventing burnout and turnover. Several informants noted the importance of having an electronic health record (EHR) that could share information across settings. Challenges: Economic sustainability was a common worry, particularly for health system and hospice sponsored programs. Several programs felt tracking metrics was an area of weakness, resulting from suboptimal informatics (IT) infrastructure, scarce IT and analytic personnel resources, and / or lack of familiarity with methods for assessing outcomes for the serious illness population. EHR systems that could not integrate or share information across settings posed a significant challenge for some programs, especially those that operate outside of a health system umbrella. Conflict with the dominant health care culture was also referenced, and some informants mentioned a need to improve their programs’ relationships with important specialty clinical services, such as oncology. Workforce shortages made hiring qualified providers a continuing challenge. Maintaining standardized operational approaches in the setting of program growth was a challenge encountered by several programs, in particular organizations that are looking to spread and sustain programs across diverse markets. Leaders that operate programs in safety net systems and in rural areas noted a number of distinct challenges, including a general scarcity of health care services and trained professionals, and the difficulty of offsetting the socioeconomic issues such as poverty and addiction that compound the stresses and challenges of serious illness for patients and families. Resources to promote growth and sustainability: Program leaders identified several supports that would promote development of new programs, or that would facilitate the sustainability, improvement and growth of existing programs. These included leadership training, in particular guidance on how to navigate “start-up” issues that are commonly encountered when creating new services. Most informants endorsed the need to create opportunities for program leaders and staff to collaborate with peers, to share best practices and lessons learned. Most program leaders expressed strong interest in efforts aimed at creating care delivery standards, as well as the need to identify feasible, meaningful metrics that would assess program quality and impact. Multiple programs saw a need for resources that would support analytic and informatics staff in meeting program needs related to communication, documentation, and quality monitoring.

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