Resources
Who else is working to expand access to palliative care?
International
World Health Organization: (WHO)
“In 2014, the first-ever global resolution on palliative care, World Health Assembly resolution WHA67.19, called upon WHO and the Member States to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care.”
“…it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured …”
“Thus, palliative care is not an option but a medical and ethical necessity that should be accessible by anyone in need at all levels of health care systems,”
Palliative Care (who.int)
New Zealand
Palliative Care Action Plan, Palliative Care Action Plan | Ministry of Health NZ
Australia
National Palliative Care strategy 2018, National Palliative Care Strategy | Australian Commission on Safety and Quality in Health Care
US National Organizations
The Center to Advance Palliative Care (CAPC)
The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality health care for people living with a serious illness. They provide essential tools for engaging stakeholders, program planning, workforce training, technical assistance, and resources for all clinicians caring for people with a serious illness.
Hospice Led Palliative Care Toolkit | Center to Advance Palliative Care (capc.org)
Coalition to Transform Advance Care (C-TAC)
C-TAC works to improve advance illness care in a fragmented system of care that is often uncoordinated and confusing. C-TAC | Coalition to Transform Advanced Care (thectac.org)
National Academy of Medicine NAM
National Academy of State Health Policy
The National Academy for State Health Policy is a nonpartisan forum of policymakers across state governments aimed at learning, leading, and implementing innovative solutions to health policy challenges.
- State Palliative Care Recommendations and Resources – The National Academy for State Health Policy (nashp.org)
- Recent State Actions that Support and Expand Palliative Care – The National Academy for State Health Policy (nashp.org)
Health Affairs
A National Strategy For Palliative Care
American Academy of Hospice and Palliative Medicine (AAHPM)
AAHPM provides learning and educational opportunities that build and sustain competence and skills to support high-quality, evidence-based hospice and palliative care practice in diverse career pathways and practice settings.
The Social Work in Hospice and Palliative Care Network (SWHPN)
SWHPN promotes the advancement of knowledge and best practices for hospice and palliative care social workers to ensure access to expert social work services for all patients and families facing serious illness.
Hospice and Palliative Nurses Association
Hospice and Palliative Nurses Association is the national professional organization that represents the specialty of palliative nursing. HPNA is dedicated to advancing expert care in serious illness through education, leadership development, advocacy, and research on behalf of its hospice and palliative care nurse members.
California State University (CSU) – Shiley Institute for Palliative Care
The Shiley Institute for Palliative Care delivers evidence-based online and in-person learning to current and future palliative care professionals working in health systems, hospices, skilled nursing facilities, case management, and physician practices. The Institute helps organizations and professionals prepare to meet the growing needs of chronically or seriously ill people in all care settings.
State Organizations
Arizona
The Arizona Coalition to Transform Serious Illness Care (AZ Coalition) is a group of 40+ stakeholders in Arizona working to improve the quality of care and outcomes for people with serious illness. The coalition is led by the Arizona Hospital and Healthcare Association, the Arizona End of Life Care Partnership, Discern Health, and the Coalition to Transform Advanced Care (C-TAC) with support from the David and Lura Lovell Foundation
California
California Healthcare Foundation
- Excellent resources to improve care for those with serious illness, including SB1004 which mandates palliative care benefits for Medicaid beneficiaries.
- Country Road: Bringing Palliative Care to Rural California [pdf]
- Accelerating Change: Community-Based Palliative Care in Public Hospitals – California Health Care Foundation (chcf.org)
- Webinar — Expanding Palliative Care in Rural Settings: Challenges and Strategies – California Health Care Foundation (chcf.org)
The Coalition for Compassionate Care of California (CCCC) is a statewide partnership of more than 95 regional and statewide organizations promoting high-quality compassionate end-of-life care for all Californians. https://coalitionccc.org/
Colorado
The Palliative Care Report is a multi-stakeholder effort to re-evaluate the state of Palliative Care in Colorado. Download Palliative Care in Colorado Report
Colorado Cancer Coalition works to engage, facilitate, expand and strengthen the statewide network dedicated to improving Colorado lives touched by cancer. Home – Colorado Cancer Coalition
Massachusetts
Massachusetts Coalition for Serious Illness Care works to ensure that healthcare for everyone in Massachusetts is in accordance with their goals, values, and preferences at all stages of life and in all steps of their care. More than one hundred Massachusetts-based organizations have come together to form this coalition. Andrew Dreyfus, President, and CEO for Blue Cross Blue Shield of Massachusetts was the founding member.
Minnesota
Minnesota Palliative Care Advisory Council Legislative Report [pdf]
Minnesota Rural Palliative Care The latest initiatives built on more than a decade of Stratis Health’s pioneering work in supporting the development of rural community-based palliative care teams and services in Minnesota. Over the past three years, Stratis Health partnered with State Offices of Rural Health in North Dakota, Washington, and Wisconsin to implement the project and the NORC Walsh Center for Rural Health Analysis to support evaluation. https://stratishealth.org/toolkit/palliative-care-resource-center/
Washington
The Washington Rural Palliative Care Initiative (WRPCI) is a pilot effort to better serve patients with serious illness in rural communities. Led by the Washington State Office of Rural Health at the Washington State Department of Health, this public-private partnership involves over 24 different organizations to assist rural health systems and communities to integrate palliative care in multiple settings, such as emergency department, inpatient, skilled rehabilitation, home health, hospice primary care, and long-term care. Washington Rural Palliative Care Initiative | WAPortal.org
Washington State Department of Health Palliative Care Road Map [pdf]
Wisconsin
Palliative Care Network of Wisconsin supports the growth of palliative care services in Wisconsin through education, systems change, and advocacy.
They are also the home of the Palliative Care Fast Facts, a national resource for clinicians caring for the seriously ill.
Standards of Care
Clinical Guidelines
The NCP Guidelines create a blueprint for excellence by establishing a comprehensive foundation for gold-standard palliative care for all people living with serious illness, regardless of their diagnosis, prognosis, age, or setting.
The NCP Guidelines expand on the eight domains of palliative care in the 3rd edition and include clinical and organizational strategies, screening and assessment elements, practice examples, tools, and resources.
The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Palliative Care 4th Edition 2018 (NCP Guidelines)
Data
Palliative Care Quality Collaborative (PCQC)
PCQC is a non-profit organization that operates a palliative careregistry capturing both programmatic and clinical quality data. Membership in PCQC allows palliative care teams to track their performance over time, benchmark against their peers, and participate in quality improvement
Communication
VitalTalk
VitalTalk makes communication skills for serious illness learnable. Their evidence-based training empowers clinicians and institutions.
Communication is the cornerstone that builds and reinforces the relationship between provider and patient. This is a skill set that requires development and practice to be successful. The VitalTalk curriculum offers evidence-based training that “makes communication skills for serious illnesses learnable” with a goal to “empower clinicians and institutions” to have better conversations leading to better care for their patients and families.
The Hawaii VitalTalk Consortium is pleased to share two Hawaii-produced videos demonstrating communication tools that are included in the VitalTalk curriculum.
- GUIDE Handout– A one-page talking map to “guide” discussions, helpful when breaking bad news
- NURSE Handout– A one-page talking map useful when responding to emotions
- For additional and free communication resources, please visit the VitalTalk website. “Quick Guides” and related videos are available in their resources section.
Ariadne Labs
Serious Illness Care Program was created by a team of palliative care experts at Ariadne Labs. The Serious Illness Care Program offers clinicians language to ask patients about their goals, values, and wishes. The guide is one element of a multi-component program creating system-level support for clinicians to have these important conversations with their patients.
At the center of the program is the Serious Illness Conversation Guide.
