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JULY 2020
Message from our Executive Director

As I recently celebrated our nation’s Independence Day and had the opportunity to reflect and cherish the democracy I live in and the freedoms I and my family enjoy (and sometimes take for granted), I also paused and recognized these freedoms are not always equally experienced by all in our society.

We have much work to do as a nation, and in hospice and palliative care. Our Coalition is working together to change how we do business. Read the full statement here as well as our members’ statements regarding recent events that have laid bare the realities of institutional racism in America.

All 13 member organizations within the Coalition have unanimously pledged to work together to take specific antiracist action and to address implicit and unconscious bias within hospice and palliative care delivery and the profession itself. As we develop new strategic priorities, educational programs, town halls and new task forces, we are committed to being more intentional in our efforts to ensure more diverse voices and issues of health equity are reflected.

Moving forward as a united Coalition, we commit to supporting legislative and regulatory policies that address disparities and inequities in our healthcare system and working with others and acknowledging our responsibility to develop specific plans to dismantle structural racism and bias within the field, including within our own workplaces.

Please join us and others around the nation to demand justice and systematic and structural change.

Amy Melnick, MPA
Executive Director
National Coalition for Hospice and Palliative Care

Coalition Welcomes New Pediatric Palliative Care Project Director, Devon Dabbs!

Photo of Devon DabbsThe Coalition is pleased to announce the selection of Devon Dabbs as the Project Director for the new Pediatric Palliative Care (PPC) Task Force, a recent initiative of the Coalition generously supported by the Cameron and Hayden Lord Foundation. Read the full announcement here.

The goal of the PPC Task Force is to improve national alignment and coordinate the diverse pediatrics activities of Coalition member organizations and others that can lead to improved access to high-quality palliative care for the children and families who need it.
Membership of the PPC Task Force will be comprised of representatives from our 13 member organizations and invited stakeholder organizations and subject matter experts in the PPC field. The Coalition is currently seeking representation from the American Academy of Pediatrics and the Children’s Hospital Association and is working with other key stakeholder organizations to identify parent/family caregiver representatives.
More information is available on the Coalition’s PPC Task Force webpage and our news article
Coalition Provides Recommendations for NIH Treatment Guidelines
The Coalition and its 13 national organizational members submitted recommendations and specific edits to the National Institutes of Health (NIH) Treatment Guidelines to include appropriate reference and inclusion of palliative care services. Read our letter and see the concise Table recommended for inclusion that summarizes the Four Essential Elements of Palliative Care in COVID-19 Pandemic Response. 

Coalition Recommendations Adopted by HHS Office of Emergency Management and Medical Operations, ASPR Technical Resources Assistance Center & Information Exchange
The Coalition submitted additional resources and recommended best practices for palliative care considerations for health care institutions combating COVID-19. HHS/ASPR/TRACIE accepted our recommendations and published the Palliative Care Technical Assistance response document for wide distribution to the nation’s health care facilities.

Coalition Supports Congressional Effort to Prioritize Future Palliative Care Training
The Coalition, along with 39 other national organizations, supported comments from the Patient Quality of Life Coalition (PQLC) to the Senate Committee on Health, Education, Labor, and Pensions’ Whitepaper: Preparing for the Next Pandemic. The response specifically expressed the need for greater improvements to the national public health infrastructure and more training for the health care and public health workforce, especially in the area of palliative care. Read the full response here.

Additional COVID Advocacy Recap
Since March, the Coalition has led advocacy efforts re: palliative care with COVID legislation, including: Coalition Sponsors COVID-19 Town Hall Series
On June 11, the Coalition sponsored its second (of four) virtual COVID-19 Town Hall - “Conversations with Coalition Leaders – COVID-19 Impact on Palliative Care and Hospice, Now and into the Future -  that featured Coalition leaders providing perspective and insight facing the field during the COVID-19 pandemic. Panelists included: R. Sean Morrison, MD, National Palliative Care Research Center; William A. Dombi, Esq, National Association for Homecare & Hospice; George Handzo, BCC, CSSBB, HealthCare Chaplaincy Network™; Colleen Mulkerin, MSW, LCSW, APHSW-C, Social Work Hospice & Palliative Care Network; and moderator, Amy Melnick, MPA, National Coalition for Hospice and Palliative Care. Hear the recording.
Also, hear the recording for the Coalition COVID-19 Town Hall held on April 2 with other national hospice and palliative care leaders who discussed COVID-19 field response, addressed top concerns and answered key questions from professionals in the field.

A 4-Part Series of Coalition webinars featuring Coalition Leaders providing perspective and insight facing the field during the COVID-19 pandemic. 
The Coalition continues to track COVID-19 national news and resources that are relevant for all health care professionals caring for people living with serious illness as follows:

COVID-19: In the News
A compendium of national news featuring the work of hospice and palliative professionals as it relates to the COVID-19 pandemic including The New York Times, The Atlantic, LA Times, Forbes, NPR and more.

COVID-19 Toolkit: Top Communication and Symptom Management Tools
(for the non-palliative care specialist)
“Top 6” resources developed by experts that cover advance COVID-19 planning, symptom management, communication in difficult situations and providing emotional support for people living with seriously ill.

COVID-19: Resources for Hospice and Palliative Care Professionals
A combined list of all the resources created by our 13 member organizations to provide information and guidance to professionals in the hospice and palliative care field on the outbreak of COVID-19.
NQF National Quality Partners™ (NQP) Action Team to Co-Design Patient-Centered Health Systems
Coalition Manager, Cozzie King, represented the Coalition on the National Quality Forum (NQF) National Quality Partners™ (NQP) Action Team to Co-Design Patient-Centered Health Systems. Learn more about this effort at a free webinar “A Conversation with the National Quality Partners™ (NQP) Action Team to Co-Design Patient-Centered Health Systems” on Tuesday July 14, 1:00 – 2:00pm ET.

During the webinar NQP Action Team members will discuss leading practices and recommendations to advance the co-design of quality improvement and patient safety initiatives within health systems. In addition, the Action Team will launch and discuss the NQP Action Team to Co-Design Patient-Centered Health Systems Issue Brief which seeks to inspire action from those in the healthcare field by highlighting key themes and opportunities stemming from the NQP Action Team discussions. Register now!

macra LOGO
MACRA Palliative Care Quality Measures Project Update
The MACRA Palliative Care Quality Measures Project is half-way through a three year effort to develop the two patient experiene measures in outpatient palliative care: 
  1. The adequacy and appropriateness of symptom management - particularly pain; and
  2. The experience of feeling heard and understood by the palliative care provider and team.
Despite the pause in data collection due to the COVID-19 pandemic, preliminary testing results from the analysis of survey data received is providing useful information for the successful development and implementation of the proposed measures.  

Thank you to the Technical Expert Clinical User Patient Panel (TECUPP) members who continue to provide the American Academy of Hospice and Palliative Medicine (AAHPM) project team expert guidance and support.

Learn more about this project and look out for a public comment opportunity re: these measures in 2021!
Copyright © 2020 National Coalition for Hospice and Palliative Care, All rights reserved.

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