Integration of Palliative Care Across California Public Health Systems A Resource Guide for Public Hospital Champions and Specialists Permission to reproduce this guide for non-commercial, educational purposes with display of attribution is granted. Citation: Anderson WG, Schoen M, Kerr K, Kinderman A, Parrish M, Rabow M, and Meyers K. Integration of Palliative Care Across California Public Health Systems: A Needs Assessment Toolkit and Resource Guide for Public Hospital Champions and Specialists, 2019. Contact: Wendy.Anderson@ucsf.edu Contents Introduction and Background ..................................................................................................................................................... 1 Rationale ............................................................................................................................................................................................. 1 Audience and Purpose ........................................................................................................................................................................ 1 Definitions ........................................................................................................................................................................................... 2 Palliative Care Resources ........................................................................................................................................................... 3 Advance Care Planning and Serious Illness Communication Resources ......................................................................................... 6 Additional Free Resources .......................................................................................................................................................... 8 Blogs .................................................................................................................................................................................................... 8 Guides and Guidelines ......................................................................................................................................................................... 8 Emergency Department ...................................................................................................................................................................... 8 Homelessness ...................................................................................................................................................................................... 8 Interpreters ......................................................................................................................................................................................... 9 Nurses’ Roles in Serious Illness Communication and Palliative Care ................................................................................................... 9 Oncology ............................................................................................................................................................................................. 9 Prognostication in Older Adults........................................................................................................................................................... 9 Pediatrics ........................................................................................................................................................................................... 10 Surgery and Trauma .......................................................................................................................................................................... 10 Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 2 Introduction Rationale: To provide the highest quality of care for all patients with serious illness, access to palliative care is imperative. But to meet the needs of this growing patient population, the palliative care model must shift from a specialist-driven model to one that supports the availability of both primary (or generalist) palliative care and specialty palliative care. Primary palliative care (basic palliative care skills all clinicians should have) is provided to patients by their primary care provider and other medical specialists. Specialty palliative care (skills for managing more complex and difficult cases) is provided by specialists for patients who need it.1 Integrating palliative care best practices and principles into the routine care of all patients with serious illness, requires skill building in the core domains of palliative care for all clinicians who care for patients with serious illness. It also requires quality improvement efforts that integrate palliative care processes into routine care across various specialties, care settings, and service lines. Palliative care specialists and champions are optimally positioned to lead efforts in both areas. Audience and Purpose: This guide was developed for palliative care champions and specialists who work in California Public Hospitals, to assist them in developing quality improvement projects to integrate palliative care into routine care across a range of service lines and patient populations. Palliative care champions and specialists from 10 of California’s public hospitals, along with an expert panel, developed the guide. The guide includes: ▪ Palliative care and advance care planning/serious illness communication resources. ▪ Resources for frontline clinicians, patients, and families, that palliative care champions and specialists can use as part of palliative care education and improvement efforts. ▪ Free resources, as well as those available for a fee or with a membership. ▪ Train-the-trainer programs and implementation resources for systems that palliative care specialists and champions can use to support their program planning and development. 1Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013 Mar 28;368(13):1173-5. doi: 10.1056/NEJMp1215620. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 1 Introduction - Continued Definitions: Serious Illness: a health condition that carries a high risk of mortality AND either negatively impacts a person's daily function or quality of life, OR excessively strains their caregivers.2 Palliative care: focuses on expert assessment and management of pain and other symptoms, assessment and support of caregiver needs, and coordination of care. Palliative care attends to the physical, functional, psychological, practical, and spiritual consequences of a serious illness. It is a person- and family-centered approach to care, providing people living with serious illness relief from the symptoms and stress of an illness. Through early integration into the care plan for the seriously ill, palliative care improves quality of life for the patient and the family.3 Primary or generalist palliative care: palliative care that is delivered by health care professionals who are not palliative care specialists. These include primary care clinicians; physicians who are disease-oriented specialists (e.g., oncologists and cardiologists); and, nurses, social workers, pharmacists, chaplains, and others who care for the seriously ill but are not certified in palliative care. 1 Palliative care specialists: clinicians who have specialized training and certification in palliative care and provide consultative services. Frontline clinicians: clinicians who have primary responsibility for the care of patients, e.g. bedside nurses, primary care physicians, hospitalists, surgeons, social workers, chaplains, as well as specialists in fields with prevalent serious illness, such as cardiology, oncology, critical care, nephrology, etc. Palliative care champions: clinicians who primarily work within a service line other than palliative care, who advocate for palliative care and support their colleagues to integrate palliative care into their area of practice. 2Kelley AS, Bollens-Lund E. Identifying the Population with Serious Illness: The "Denominator" Challenge. J Palliat Med. 2018 Mar;21(S2):S7-S16. 3National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 2 Palliative Care Resources The following resources, grouped by organization, address a number of domains of palliative care. e.g. pain and symptom management, psychosocial and spiritual care, advance care planning, serious illness communication. These resources are relevant to a range of patient populations. Paid or Membership Train the Trainer and Organization Description Free Resources Resources Resources for Systems Center to Advance Palliative Get Palliative Care is a Comprehensive on-line Membership includes a broad Care (CAPC) comprehensive website with a palliative care curriculum for range of tools for building and A national organization wealth of free resources for all clinical disciplines, with strengthening palliative care dedicated to increasing the patients and families. Includes continuing education credits. programs, including tools for availability of quality health information about palliative Courses are free for clinicians demonstrating value and care for people living with a care domains, a provider at member organizations. assessing quality, as well as serious illness. directory, and support and Membership is $3500/year for content for the ICU, ED, and educational resources. safety net hospitals. pediatrics. Membership required to access most clinician resources. Some courses are available to non-members, e.g. An In-Depth Look At Palliative Care And Its Services California State University – Community resources & free Online courses, instructor-led Organizational training offered, Shiley CSU Institute for caregiver handbook and self-paced, for a range of including team training and Palliative Care Blog clinical disciplines. Continuing starting a community-based The Institute offers high-quality education credits offered. Cost palliative care program. palliative care introductory and varies by course, continuing education courses approximately $130 per credit for a wide range of health hour. professionals. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 3 Palliative Care Resources - Continued Paid or Membership Train the Trainer and Organization Description Free Resources Resources Resources for Systems End-of-Life Nursing Education N/A Online courses: $59.95 per ELNEC is a train-the-trainer Consortium (ELNEC) curriculum or $19.95 per program. Upon program Comprehensive undergraduate, module. Institutional pricing completion, free materials are graduate, and continuing available. available for teaching. education for nurses in In person 2-day trainings, palliative care, including pain nationally and regionally. and symptom management, Tailored courses for critical communication, psychosocial care, oncology, geriatrics, issues, and spiritual care. pediatrics, advanced practice. Education for Physicians in End- N/A Distance learning includes 16 Become an EPEC Trainer of-life Care (EPEC) modules that consist of Conference: 2-day conference Education for healthcare information, video cases, and to learn to teach the essential professionals from a range of discussion boards. AMA PRA clinical competencies of disciplines in the essential Category 1 Credit(s)™ per palliative care to others. clinical competencies of module, $30 per module. Includes clinical content and palliative and end-of-life care. Tailored curricula for teaching methodology. emergency medicine, Participants receive EPEC pediatrics, veterans, educational materials including caregivers. Curriculum, slides, and videos. Cost: $1295. Palliative Care Network of Website Fast Facts CME N/A Wisconsin - Fast Facts and Mobile Application Online CME. $52.50 covers 8 Concepts courses, on a range of topics. Concise, practical, peer- reviewed, and evidence-based summaries on a range of palliative care topics. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 4 Palliative Care Resources - Continued Paid or Membership Train the Trainer and Organization Description Free Resources Resources Resources for Systems Harvard Medical School Center N/A Practical Aspects of Palliative Palliative Care Education and for Palliative Care Care (PAPC): 3-day Practice (PCEP): 2-week course Offers in-person continuing introduction to palliative care for physicians, nurses, and education courses, and an clinical practice for physicians, social workers. In depth interprofessional fellowship. nurses, social workers, and coverage of clinical topics, other clinicians. mentorship in a leadership project. Adult and pediatric tracks. Stanford University - Palliative Stanford Palliative Care N/A N/A Care Training Portal and Training Portal: learning Palliative Care Always modules, resources and Free on-line courses in palliative training materials on a range care. of topics (e.g., dyspnea prognostication, bereavement, opioid conversion). Palliative Care Always: longitudinal 5-month online, case-based course designed for health care practitioners who work in cancer care. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 5 Advance Care Planning and Serious Communication Resources The following organizations provide leading advance care planning and serious illness communication resources. Paid or Membership Train the Trainer and Organization Description Free Resources Resources Resources for Systems Ariadne Labs Serious Illness At the center of the program is The Serious Illness Conversation Guide is one element of a multi- Care Program the Serious Illness component program creating system-level support for clinicians The program’s goal is for every Conversation Guide, which to have these important conversations with their patients. seriously ill patient to have offers clinicians language to For a fee, institutions can join a collaborative that provides more, better, and earlier ask patients about their goals, health systems with the roadmap, tools, and support to conversations with their values, and wishes. implement the Serious Illness Care Program. This support clinicians about their goals, Free registration provides includes a) communication skills training to teach others to use values, and priorities that will access to a community of the Serious Illness Conversation Guide, and b) implementation inform their future care. practice with implementation strategies to identify patients, prompt clinicians, document support including peer discussions, and monitor progress. mentoring, downloadable Financial assistance is available: inquire at materials, videos, webinars. sicollaborative2019@ariadnelabs.org. Coalition for Compassionate A number of free resources are Annual palliative care summit Trainings offered on promoting Care of California (CCCC) available, including: Webinars on a range of advance care planning, Interdisciplinary partnership of Advance care planning tools palliative care topics: some are culturally congruent care, end leaders from health care and resources: discussion free, some cost up to $99. of life options act, POLST. systems and organizations, guides, decision aids, Discount for members. government agencies, information about advance consumer organizations, and directive and POLST forms for the public. Advocacy, clinicians and patients/families, education, and resources to and billing information. expand palliative care. End of Life Option Act: information for patients and families. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 6 Advance Care Planning and Serious Communication Resources - Continued Paid or Membership Train the Trainer and Organization Description Free Resources Resources Resources for Systems VitalTalk Mobile Application Online course Delivering Faculty development course: Non-profit organization that Videos & quick guides Serious News $110 / 5 CME 4-day course to learn to teach offers resources and training including: delivering serious credits. serious illness communication on advanced serious illness news, advance care planning, In person introductory workshops. $5000. communication skills. discussing prognosis, and Mastering Tough Institutional courses: VitalTalk Appropriate for clinicians from goals of care. Videos can be Conversations workshops, 4 can lead a workshop for your a range of specialties and downloaded for teaching per year in Bay Area and system. disciplines. purposes. AAHPM/HPNA pre-course each Blog year. $500 / 7 CME credits. PREPARE for Your Care Web based advance care Most PREPARE resources are free and can be used without a Online evidence-based planning tool: guides users in license. resource that helps people exploring wishes, discussing PREPARE can be licensed by healthcare and other organizations. learn about and prepare for them with family, friends, and A license with the Regents of the University of California is medical decision making. Uses medical providers, and required if PREPARE is to be used in research, quality video stories in English and documenting them. improvement, or clinical demonstration projects. Spanish. Easy-to-Read Advance Directives: legally-binding directives available for all 50 states in English and Spanish. Advance Care Planning (ACP) Free Patient Content: some ACP Decisions partners with health care organizations to Decisions videos about advance care enhance advance care planning using video decision aids and Non-profit organization that planning, POLST, and palliative tools. Organizations can tailor their own ACP strategy using ACP offers evidence-based, expert- care. Decisions video library, which consists of over 280 videos, reviewed video decision including decision aids, educational videos for clinicians, support tools for patients and patients, and caregivers, and training and implementation families. videos. Content available in 20 languages. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 7 Additional Free Resources - Continued Blogs ▪ GeriPal (Geriatrics and Palliative care): forum for discourse, recent news and research, and free-thinking commentary. Ongoing podcast features interviews with national leaders on a range of topics. ▪ Pallimed: hospice and palliative care research, news, opinion, and media coverage of hospice and palliative care issues. Guides and Guidelines ▪ Weaving Palliative Care into Primary Care: A Guide for Community Health Centers (California Health Care Foundation): introduction to primary palliative care and a detailed description of the steps required to plan, build, and integrate a primary palliative care program into a clinic setting. Provides planning tools and worksheets to help community health centers get started. Multiple appendices include primary palliative care resources from a wide variety of organizations and experts. ▪ Clinical Practice Guidelines for Quality Palliative Care, 4th edition (National Consensus Project): defines gold-standard palliative care for all people living with serious illness, regardless of their diagnosis, prognosis, age or setting. This edition has s pecific content on generalist palliative care, and includes practice examples to guide improvement. Endorsed by more than 80 organizations nationally. Emergency Department ▪ Palliative Care Screening Tool in the Emergency Department. Reference: George N, Barrett N, McPeake L, Goett R, Anderson K, Baird J. Content Validation of a Novel Screening Tool to Identify Emergency Department Patients With Significant Palliative Care Needs. Acad Emerg Med. 2015;22:823-37. Homelessness ▪ National Health Care for the Homeless Council, End of Life Care Resource Page: includes recommendations for caring for people experiencing homelessness—includes advance care planning and case studies. ▪ Homeless Palliative Care Toolkit: A research informed toolkit with information and resources for frontline staff supporting people who are homeless and who have significant health needs. Includes focus on identifying clients in need of palliative care at the time staff have a concern about a client’s deteriorating health, and provides resources, tools and activity worksheets to help in planning and providing person centered, multiagency care for homeless people. Developed by a partnership between a palliative care group and a homeless charity organization in the United Kingdom. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 8 Advance Care Planning and Serious Communication Resources - Continued Interpreters ▪ Interpreting in Palliative Care Curriculum (California Health Care Foundation): free, downloadable seven-hour workshop curriculum designed for health care interpreter trainers to use in preparing experienced medical interpreters to work in palliative care settings. Curriculum is also available as a self-paced web-based course for $35 through the Health Care Interpreter Network (HCIN). Nurses’ Roles in Serious Illness Communication and Palliative Care ▪ IMPACT-ICU (Integrating Multidisciplinary Care into the ICU) integrates palliative care into critical care by training and supporting bedside nurses, especially around serious illness communication. Tools include: − Webinars through the American Association of Critical-Care Nurses (AACN): Palliative Care in the ICU: Critical Communication Skills, Palliative Care in the ICU: A 360° View of The Nurse’s Role, Palliative Care in the ICU: Communication Skills in Practice. Viewing is free (need to create an AACN log-in). AACN members receive free CEUs. CEUs are $10 for non-members. − Videos and downloadable content: can be used to guide presentations. Includes a pocket card, study guides, and goals/skills sheets. Videos can be streamed from VitalTalk or downloaded from Vimeo for use off-line. − In person workshop, for faculty who have been trained in small group role-play facilitation. We recommend a VitalTalk Faculty Development course or the equivalent. Consultation with the IMPACT-ICU team can be requested here. Oncology ▪ Clinical Practice Guidelines for Supportive Care: Palliative Care (National Comprehensive Cancer Network): evidence-based, consensus-driven recommendations made by the NCCN Guidelines panels. Includes guidelines, as well as information about services that should be provided as a basic standard of care, as well as additional services that provide major improvements in disease outcomes when they can be implemented. Note: must register to access resources. ▪ Palliative Care Resource Page (American Society of Clinical Oncology): includes information about meetings & courses, guidelines, tools and resources, and advocacy and policy statements; patient resources; and a journal collection. Prognostication in Older Adults ▪ ePrognosis: repository of published geriatric prognostic indices where clinicians can go to obtain evidence-based information on patients' prognosis. Easy to use on-line calculators to estimate prognosis, as well as information about applying prognosis to cancer screening and prognostic communication. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 9 Advance Care Planning and Serious Communication Resources - Continued Pediatrics ▪ American Academy of Pediatrics Section on Hospice and Palliative Medicine: includes information about palliative care for children aimed at both professionals as well as families, including policies, resources, curricula, and newsletters. ▪ Children's Project on Palliative/Hospice Services: ChiPPS: ChiPPS serves as the National Hospice and Palliative Care Organization's (NHPCO) pediatric advisory council. Their website includes information about palliative care and hospice for children, as well as professional resources and education, and information for families. Surgery and Trauma ▪ American College of Surgeons Trauma Quality Improvement Program Palliative Care Best Practices Guidelines: recommendations for identifying and addressing palliative care needs in injured patients and their families. Includes clinical content and performance improvement guidance. ▪ Best Case / Worst Case: communication framework for face-to-face discussions about treatment options in the context of serious illness. Designed to help physicians discuss options with frail older patients and their families to achieve treatment decisions that align with patient preferences. Integration of Palliative Care Across California Public Health Systems: A Resource Guide for Public Hospital Champions and Specialists 10