While specialist palliative care is available in many acute care hospitals, people with serious illness and their families can also benefit greatly from community-based palliative care (CBPC), an emerging field that is starting to take root in communities across California.
This resource center provides strategies and support for organizations that are planning, implementing, or enhancing an outpatient CBPC program. Resources include:
- Key Concepts: Essential information about the need for and prevalence of CBPC
- Best Practices: Guidelines to support program development, monitoring, and improvement
- Program Descriptions: Practical characteristics of existing programs and models
- Making the Case: Considerations for building a business model and demonstrating value
- Measures and Outcomes: Sampling of metrics and performance reports
- Tools: Tools to help organizations identify needs and assess impact
- Educational Resources: Courses to build the skills of palliative care specialists and generalists
- Professional Organizations: Palliative care leadership organizations
1. Key Concepts
Because community-based palliative care is continuously evolving, it's critical to have up-to-date information on CBPC services (and what it will take to improve their quality). These resources provide foundational information and guidance for existing and emerging palliative care programs.
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life
Expert consensus report with recommendations for care delivery, clinician-patient communication and advance care planning, professional education and development, payment systems and policies, and public engagement and education. (Institute of Medicine)
Honoring Patients' Wishes: Expanding Palliative Care in California
Report describing potential impact and challenges of expanding access to CBPC, recommended focus areas, and promising models for providing care outside the hospital. (Berkeley Forum)
Uneven Terrain: Mapping Palliative Care Need and Supply in California
Data maps that contrast the estimated need for palliative care among people in the last year of life with information about the availability of hospital and community programs in California. (California Health Care Foundation)
Final Chapter: Californians' Attitudes and Experiences with Death and Dying
Report of results from a survey examining Californians' preferences, attitudes, and experiences around end-of-life issues. (California Health Care Foundation)
Gather Round: Understanding How Culture Frames End-of-Life Choices for Patients and Families
Report describing the learning and decisionmaking experiences of people approaching the end of life, and their loved ones, based on in-depth interviews with culturally diverse families. (California Health Care Foundation)
2. Best Practices
Palliative care experts, specialty care associations, and quality leaders have developed clinical guidelines and endorsed practices to support the delivery of high-quality palliative care. These materials can help new and established programs develop and evaluate core service components.
Clinical Practice Guidelines for Quality Palliative Care, 3rd Edition
Clinical guidelines to help palliative care programs develop and measure essential aspects of care across eight domains. (National Consensus Project)
NCCN Clinical Practice Guidelines in Oncology – Palliative Care (PDF; free registration required)
Clinical guidelines for managing physical and emotional pain and symptoms and other palliative care issues for people with cancer. (National Comprehensive Cancer Network)
A National Framework and Preferred Practices for Palliative and Hospice Care Quality
Report describing a quality assessment framework and preferred practices to help organizations develop and improve palliative care and hospice programs. (National Quality Forum)
Dying in America: IOM Committee's Proposed Core Components of Quality End-of-Life Care (PDF)
Supplement to the larger IOM report Dying in America, presenting the IOM committee's consensus summary of the core components of quality end-of-life care. (Institute of Medicine)
ASCO Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care
Clinical guideline and tools supporting early concurrent palliative care early for patients with metastatic cancer or advanced cancer. (American Society for Clinical Oncology)
Palliative and End-of-Life Care in Stroke: A Statement for Healthcare Professionals from the AHA/ASA
Statement describing essential primary palliative care competencies for providers and organizations caring for patients and families with stroke. (American Heart Association and American Stroke Association)
3. Program Descriptions
A growing body of materials describes a range of models for delivering community-based palliative care (CBPC), highlighting how programs differ in composition of interdisciplinary teams, patients served, and types of services provided.
Up Close: A Field Guide to Community-Based Palliative Care in California
Report describing characteristics, challenges, and promising practices of CBPC provider organizations in California that participated in a one-year learning community. (California Health Care Foundation)
Innovative Models in Palliative Care Fact Sheets
This companion piece to Up Close: A Field Guide to Community-Based Palliative Care in California describes several innovative models for delivering CBPC. (California Health Care Foundation)
Snapshots of Palliative Care Practices
Summary of information shared by participants in the 2015 Coalition for Compassionate Care Annual Summit, including approaches to working with patients, working with providers, and measuring the impact of palliative care services. (California Health Care Foundation and Coalition for Compassionate Care of California)
Weaving Palliative Care into Primary Care: A Guide for Community Health Centers
Primary care providers in community health clinics are optimally positioned to address the initial palliative care needs of patients with serious chronic and terminal illnesses, and to address triage and referral to specialists. (California Health Care Foundation)
AHRQ Health Care Innovations Exchange (Search for "end-of-life care".)
Searchable database of evidence-based health care innovations and tools from across the country. (Agency for Healthcare Research and Quality)
4. Making the Case
Resources for developing the right program model and demonstrating the quality and financial impacts of CBPC services. Also see the sections Measures and Outcomes and Tools.
The Business Case for Palliative Care: Translating Research Into Program Development in the US
Review of the key principles that inform the business case for specialty palliative care in the US, including discussion of how these principles can be used to support program development. (Journal of Pain and Symptom Management)
Improving the Care of Serious Illness Through Innovative Payer-Provider Partnerships: A Palliative Care Toolkit and Resource Guide
Report with tools and resources to support payers and providers in collaborating to provide palliative care. (Center to Advance Palliative Care and National Business Group on Health)
Five Ways to Pay: Palliative Care Payment Options for Plans and Providers
Issue brief describing five examples of payment models and how they impact health plans and providers. (California Health Care Foundation)
A Better Benefit: Health Plans Try New Approaches to End-of-Life Care
Report describing programs and benefits that several health plans in California are using to increase access to palliative care. (California Health Care Foundation)
Developing a Business Plan for Your Outpatient Palliative Care Program: A Technical Assistance Monograph (PDF)
Review of concepts and process for developing a business plan for a CBPC program. (Center to Advance Palliative Care)
Value Snapshots for Advance Care Planning, Inpatient Palliative Care, Home-Based Palliative Care, Palliative Care Clinics, Hospice Care
Brief, evidence-based descriptions of rationale for and impact of different types of palliative care services. (California Health Care Foundation and Coalition for Compassionate Care of California)
Finding Common Ground: Quality and Fiscal Incentive Alignment for Community-Based Palliative Care (PDF)
Graphic describing the impact of palliative care and hospice on clinical care, satisfaction, and utilization, and how these outcomes benefit various health care entities. (California Health Care Foundation and Coalition for Compassionate Care of California)
Palliative Care in the Outpatient Setting
Report evaluating the evidence on the clinical effectiveness and value of palliative care services with an overview of the policy landscape surrounding palliative care, and a summary of the March 31, 2016, public meeting of the New England Comparative Effectiveness Public Advisory Council. (Institute for Clinical and Economic Review [ICER])
Effect of a Home-Based Palliative Care Program on Healthcare Use and Costs
Article describing nonclinical outcomes of the Transitions program at Sharp HealthCare in Southern California, a home-based palliative service for Medicare Advantage plan beneficiaries with advanced chronic illness. (Journal of the American Geriatrics Society)
5. Measures and Outcomes
Assessing quality and measuring the impact of community-based palliative care (CBPC) services is essential for identifying and addressing gaps in care. The following resources provide information on metrics endorsed by national quality leaders and clinical experts. Tools that support selecting metrics for a comprehensive evaluation plan are available in the Tools section.
National Voluntary Consensus Standards for Palliative Care and End-of-Life Care
Brief summary and full report describing 14 endorsed measures. (National Quality Forum)
Quality Positioning System (Search for "palliative care".)
Searchable database of endorsed or formerly endorsed measures. Includes items endorsed for palliative and end-of-life care delivered to any individual, as well as palliative care measures for specific diseases. (National Quality Forum)
Measuring What Matters
Consensus recommendations on performance measures for hospice and palliative care programs. (American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association)
Quality Oncology Practice Initiative
Information and tools for outpatient oncology practices to assess and improve care, including 26 measures addressing end-of-life care. (American Society of Clinical Oncology)
PEACE Hospice and Palliative Care Quality Measures
Information and practical clinical tools that support measuring quality of care and using data to inform quality improvement initiatives. The quality measures address domains included in the National Consensus Project for Quality Palliative Care and those endorsed by the National Quality Forum. (Carolinas Center for Medical Excellence and University of North Carolina-Chapel Hill)
Dartmouth Atlas of Healthcare
Information, searchable database, and customizable reporting tools on health care performance across the country, including subtopics on care of chronic illness in the last two years of life and end-of-life care. (The Dartmouth Institute for Health Policy and Clinical Practice)
NHPCO's Facts and Figures: Hospice Care in America, 2014 Edition (PDF)
Annual report describing trends in the growth, delivery, and quality of hospice care. (National Hospice and Palliative Care Organization)
These resources can help organizations assess the need for new or expanded CBPC services, and the quality and impact of existing services.
Palliative Care Measure Menu
This tool enables palliative care leaders, quality professionals, and administrators to quickly and efficiently select a feasible, balanced portfolio of quality measures that mirror the scope and focus of a given PC program. (California Health Care Foundation)
Community-Based Palliative Care Opportunity Analysis: Overview and Tables for Baseline Utilization and Month-to-Month Utilization
Description and tools to support use of the CBPC Opportunity Analysis, which provider organizations can use to assess the need for and expected impacts of CBPC services. (California Health Care Foundation and Coalition for Compassionate Care of California)
Supportive Care Calculators – Clinic and Home-Based Services
Tools to help clinical and administrative leaders make data-driven decisions about the costs and expected benefits of creating or expanding palliative care clinics or home-based services. (California Health Care Foundation and Coalition for Compassionate Care of California)
Assessing Adherence to the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Palliative Care (DOC)
Self-assessment tool to help identify structures and processes that could be included in a proposed CBPC service, or to assess an existing service's adherence to the NCP guidelines. (California Health Care Foundation and Coalition for Compassionate Care of California)
7. Educational Resources
These resources, online or in-person, address the educational and training needs of palliative care specialists and generalists.
California State University Institute for Palliative Care
Instructor-led and self-paced online courses for the current and future palliative care workforce and for patients and families. The Building a Community-Based Palliative Care Program series of self-paced courses walks users through every step of the CBPC development process. In addition, the institute offers interprofessional courses as well as discipline-specific courses for nurses, social workers, and chaplains, with options for certificate courses for palliative care specialists and overview courses for generalists.
Palliative Care Leadership Centers
In-person and virtual intensive, operational training and year-long mentoring for palliative care programs at every stage of development and growth. Eight leadership centers are located across the United States.
Stanford Palliative Care Training Portal
Free online clinical training modules for doctors, nurses, psychologists, social workers, and other allied health personnel. Topics include palliative care overview, prognostication, communication, opioid conversion, dyspnea, home hospice, palliative sedation, transition to death, and bereavement.
Center to Advance Palliative Care
Online courses aim to build the primary and specialist palliative care skills of front-line clinicians. CEU/CME credits are offered for social work, nursing, and medicine. Courses address clinical and operational issues such as pain management, communication skills, palliative care across settings, building a program, and leadership support.
Fast Facts and Concepts
Searchable library of concise, practical, evidence-based summaries of key clinical palliative care topics. (Center to Advance Palliative Care and Medical College of Wisconsin)
Education in Palliative and End-of-Life Care (EPEC)
Curriculum for palliative care education, with adaptations for specialty groups, to improve skills in communication, ethical decisionmaking, psychosocial considerations, and symptom management.
End-of-Life Nursing Education Consortium (ELNEC)
Education initiative and curricula to train nurses and nursing students in essential palliative care skills. (American Association of Colleges of Nursing)
Advanced communication skills courses and faculty training courses to support conversations about serious illness and end-of-life care.
Palliative Care Education and Practice
Intensive 15-day learning experiences for physician and nurse educators on the clinical practice, program development, and teaching of comprehensive, interdisciplinary palliative care. (Harvard Medical School)
Palliative Care Network of Wisconsin (PC NOW) (free registration required)
Resources include self-study resources in clinical care for generalists or specialists, educational resources to teach others, and tools and resources.
Interpreting in Palliative Care Workshop Curriculum
Free curriculum for trainers of medical interpreters to use in preparing experienced interpreters to work in palliative care settings. Includes materials in simplified Chinese, traditional Chinese, Korean, Russian, Spanish, Tagalog, and Vietnamese. (California Health Care Foundation and Health Care Interpreter Network)
Online platform developed by five UC campuses to support training of medical students, residents, and practicing physicians using case studies and tutorials; section on palliative and end-of-life care features content on pain management, improving communication with patients and family members, and ethical issues. (University of California, Davis)
8. Professional Organizations
Center to Advance Palliative Care
National member-based organization providing training, tools, and technical assistance to support palliative care growth.
Coalition for Compassionate Care of California
Statewide collaborative dedicated to the advancement of palliative medicine and high-quality, compassionate end-of-life care.
National Hospice and Palliative Care Organization
Nonprofit membership organization representing hospice and palliative care programs and professionals in the United States.
California Hospice and Palliative Care Association
Statewide membership association that promotes the delivery of palliative and hospice care through education and advocacy.
American Academy of Hospice and Palliative Medicine
Association representing nearly 5,000 physicians, nurses, and other professionals in the specialty of hospice and palliative medicine.
Hospice and Palliative Nurses Association
Group representing 11,000 nurses and offering educational products and services to advance skills in all levels of nursing.
Social Work Hospice and Palliative Care Network
National network of psychosocial palliative care professionals dedicated to championing best practices, research, and advocacy for the palliative and hospice social work field.