The end of life and how people die has changed a great deal in the past century. Thanks in large part to advances in public health, medicine, and health care, Americans typically live longer than their forebears and, more often than not, die after a period of chronic illness. Many Americans will now experience a substantial period of living with serious illness, mostly progressive and life-limiting. An estimated 45 million Americans are living with one or more chronic conditions that limit personal function and are likely to worsen rather than get better.
Currently, there is a broad shift in the health care sector from institutional to community-based care, driven by many factors. These factors include: demographic trends (i.e., increased numbers of frail elders); patient preferences for non-institutional care (e.g., hospitals, nursing homes); safety concerns (e.g., exposure to antibiotic resistant bacteria more likely in hospital settings); functional deterioration experienced by elders in hospital environments (see here); and cost concerns.
Patients want to receive care in their community and in their homes. This is particularly true for “high-need” individuals: people living with multiple health conditions who are also limited in their ability to perform everyday tasks, such as bathing, dressing and preparing meals. Many people will be living with serious illness for several years and need new models of care in the places they live, and that integrate the currently fragmented array of primary, specialty and end-of-life care services.
A recent white paper developed for the National Academy of Medicine Roundtable on Quality Care for People with Serious Illness, Community-Based Models of Care Delivery for People with Serious Illness, identified core competencies that set the standard for a high-quality program, including:
- Identification of the target population
- Team-based care
- Caregiver training
- Attention to social determinants of health
- Communication training and supports
- Goal-based care plans
- Symptom management
- Medication management
- Accessible (including 24/7 coverage)
- Transitional care
- Ability to measure value for accountability and improvement
While community-based care for people with chronic conditions and functional limitations is not new, it is just coalescing from fragmented pockets of activity into a more established field. Recently, our Patient Care Program sought to better understand the current landscape of community-based programs for the seriously ill in the U.S. by funding a project to identify them. The goal was to identify programs that provide most, if not all, of the core components outlined in the National Academy of Medicine report.
The result is a report, Community-Based Model Programs for the Seriously Ill, with eight profiles of programs that completely or mostly offer the essential components of serious illness care, and whose successes and challenges appear to be representative of broader trends. Entities that sponsor such programs include health plans, health systems, hospices, medical groups and specialty organizations. Some programs offer integrated care while others provide “add-on” services which supplement what the patient’s care team offers. Some are nonprofit and some are for-profit entities. In addition to an executive summary and case studies, there is a list of 100 additional programs with brief descriptions of the services provided.
The report also identifies key elements leading to successful implementation and sustainability of the subset of programs explored in more detail, including: internal and external partnerships; supportive organizational leadership; efforts to support care team members through education, mentorship, and wellness programs; and the ability to share information across settings (usually through an electronic health record). Some of the key challenges identified include difficulty in tracking metrics, lack of the ability to easily share information across settings, workforce shortages, maintaining quality during rapid expansion and issues with payment. In recognition of the importance of payment issue, the foundation contracted with Discern Health to conduct an analysis of the degree to which emerging payment models provide the necessary resources and flexibility to support community-based serious illness programs. Learn more here.
While the field is beyond the proof-of-concept stage and there is evidence to support a community-based delivery model, work remains to encourage the geographic spread of programs capable of dealing with more diverse patient populations. As more of these programs develop, it is important to track their development over time and to be able to compare programs, as well as to promote standardization to improve the quality of care. Ensuring that patients in these programs receive high-quality care, consistent with their goals and preferences, is critical and difficult to do at present. As described in another Perspective piece, the foundation is investing in the development of a robust accountability system for community-based serious illness care, to measure and report on the quality of care of these emerging programs.
Community-Based Model Programs for the Seriously Ill provides a snapshot of the current state of the field and is a starting point to more systematically collect information on these programs across the country. Through funding to the Center to Advance Palliative Care, we will see expansion of their registry of hospital-based programs to include community-based programs. This will enable the field to monitor the prevalence of these programs and to use that comparative data to inform policy and care practices. We hope this report will serve as a resource to organizations that are already offering such services or that are thinking about doing so, by highlighting key issues and by profiling specific examples that may provide guidance as they seek to provide high-quality, affordable care to high-need patients.
Diane Schweitzer is program director for the Patient Care Program at the Gordon and Betty Moore Foundation.