MESSAGE FROM OUR EXECUTIVE DIRECTOR
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Voting is a fundamental expression of freedom that can not be taken for granted
This year, in Virginia where I live, there have been many options available to cast your ballot. As of October 29, at the time of this writing, just over 2 million votes have been cast, which is 1/2 of all votes cast in 2016. Many voters, including me, appreciated the many options available, due to worries about going to potentially crowded polling stations on November 3 and risking exposure to the coronavirus.
I am not going to tell you whom to vote for but I am going to urge you to VOTE (in person, early if still possible, or absentee). I also encourage you to research your states efforts to keep this election safe and secure. I know I appreciate the great care local Registrars have taken to ensure the integrity of our elections. These professionals are working hard each day to ensure every vote is verified, secured, protected, and counted.
As you evaluate the choice of candidates you have on your ballot, a few key questions have come to mind:
- Which ones will handle this ongoing pandemic in the way you think it should be handled?
- Which ones will confront the national realities of grief and loss we have not yet come to grips with?
- Which ones will dedicate the resources needed to address this pandemic and lead our nation (and local areas) through the pandemic of polarization and towards a nation that needs healing?
- Which ones will work towards a more inclusive society?
After the election, we will need to transcend our political differences and opinions and focus on healing our community, helping our community, and working together on the challenges that confront us. We must work to ensure that this election and its aftermath does not fracture our community or our workplaces. It is ok that some may be disappointed about the outcome of the election but let us not disagree about the future and the support of our democracy and the health care challenges that need to be overcome.
Amy Melnick, MPA
Executive Director
National Coalition for Hospice and Palliative Care
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PULSE CHECK
When thinking about the upcoming election and its’s aftermath, how do you feel? Answer HERE
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DIVERSITY, EQUITY AND INCLUSION
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Coalition Sponsors COVID-19 Town Hall on Health Disparities and Coping with Stress
The Coalition hosted a series of four virtual COVID-19 Town Halls, “Conversations with Coalition Leaders – COVID-19 Impact on Palliative Care and Hospice, Now and into the Future,” over the past six months. Each featured various interdisciplinary Coalition leaders from nearly all Coalition organizations providing perspective and insight facing the field during the COVID-19 pandemic.
The fourth and final Town Hall, held September 21, included a rich discussion on health disparities with communities of color and coping with stress that was moderated by Wendy Jo Toyama, MBA, CAE, (AAHPM). Other speakers included: Janet Bull, MD, MBA, FAAHPM, HMDC (PCQC), Rev. Dr. Jeffrey T. Garland, DMIN, EdS, BCC-PCHAC (APC), Anne Kelemen, APHSW-C, LICSW, (SWHPN), and Michelle Webb, RN, DNP, BC-CHPCA (HPNA). Hear the full recording for more inspiration.
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"...we have applied the interdisciplinary approach of caring for others as we care for ourselves in this new and challenging reality."
Michelle Webb, RN, DNP, BC-CHPCA, Hospice and Palliative Nurses Association
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"...in response to the pandemic, change was accelerated in a rapid way...we went from high touch to high tech...We had to train all the disciplines in a very short time on how to be able to communicate in a virtual space..."
Janet Bull, MD, MBA, FAAHPM, HMDC, Palliative Care Quality Collaborative
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Coalition Provides Hub of DEI Resources
The Coalition has created a specific webpage of collated DEI information and resources from our member organizations and others at www.nationalcoalitionhpc.org/DEI. Please bookmark this webpage and use it! Help us help our field learn more and self-reflect about issues surrounding health and racial equity and let us challenge ourselves to have conversations within our peer groups, colleagues, and organizations.
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DEI Poll Follow-Up
THANK YOU to those who responded to our poll question in our last Coalition Edition issue: What is one activity that your organization is doing to address systemic racial injustice within your workplace and/or for the patients/families you serve? The following are two practical suggestions from your responses:
- “We are focusing our QI activities on racial differences / inequities / disparities for this year and perhaps into next year. This includes projects endorsed by our formal quality committees, as well as less-formal projects conducted by trainees such as our HPM fellows.”
- “We are looking at the demographics of the patient population we see in our outpatient palliative care clinic and comparing it to the referral base and seeing if there are any trends of under or over representation.”
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PEDIATRIC PALLIATIVE CARE TASK FORCE
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Message from the Pediatric Palliative Care Task Force Co-Chairs
On behalf of the Pediatric Palliative Care Task Force, we are excited and want to thank the Coalition for bringing together this novel, interdisciplinary group of stakeholders with the goal of improving access to pediatric palliative care nationally. With representation from all 13 Coalition member organizations, the American Academy of Pediatrics, and three family advocates, the Task Force is uniquely positioned to collaboratively drive forward the field of pediatric palliative care.
Our work is also supported by a dedicated group of alternate Task Force members and our Family Advisory Council. In addition, formal invitations to join have been extended to the Children’s Hospital Association, the American Psychological Association, and the Association of Child Life Professionals.
The group has met twice and will continue to meet monthly (see photo above). Our work thus far has centered on group formation, clarifying our goals, and drafting mission and vision statements. As we move forward, our work will focus on setting priorities, bringing together stakeholders and resources, and ultimately creating sustainable partnerships that increase access across settings and address the capacity, geographic, and financial challenges that can impede care.
We speak for the group when we say how honored we are to be able to do this work. Our deepest gratitude to the Cameron and Hayden Lord Foundation for funding this important initiative and to the Coalition for its support. We look forward to continuing to update you on our progress! In the meantime, should you have any questions or comments please feel free to reach out to us at peds@nationalcoalitionhpc.org.
Warmly,

Rachel Thienprayoon, MD, and Cheryl Ann Thaxton, DNP
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National Pediatric Palliative Care and Hospice Survey: Please Respond!
Just 10 minutes of your time can help improve children’s access to critical palliative care services. Whether you have a full pediatric program, provide services for the occasional pediatric patient, or are not currently providing pediatric services, your input will help shape the future of pediatric palliative and hospice care. The National Hospice and Palliative Care Organization (NHPCO) is conducting this national survey (closes November 15) and will be sharing the results with the field.
Please note that you must complete the survey in one sitting, as you don't have the ability to save your progress. Click here to get started!
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Did you know the NCP GUIDELINES includes Pediatrics?
The latest edition of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care focuses on improving access to quality palliative care for all people with serious illness, regardless of setting, diagnosis, prognosis, or age.
Guidance specific to pediatric palliative care is integrated throughout the guidelines along with a robust list of pediatric tools and resources. To learn more, download a free copy of the NCP Guidelines and a PowerPoint (with speaker notes) that highlights the pediatric content.
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Coalition Sponsors Messaging Workshops Series for Members and Stakeholders
The Coalition and National Hospice and Palliative Care Organization spearheaded a joint letter that was sent to the Capitol Hill leaders and HHS officials on September 23 requesting support for testing a new health care payment and delivery model that would improve access to community-based palliative care for patients and families facing serious illness.
Specifically, the request (signed by an additional 27 national organizations and 34 state organizations) urged Secretary of Health and Human Services Alex Azar to develop and implement a community-based palliative care demonstration through the Centers for Medicare & Medicaid Services Center for Medicare & Medicaid Innovation (CMMI). Read the final letter here.

Coalition Supports PQLC Comments on 2021 Medicare Physician Fee Schedule
The Coalition (and 22 other organizations) signed on to a letter the Patient Quality of Life Coalition (PQLC) sent to CMS/HHS that provided comments on the calendar year 2021 Payment Policies under the Physician Fee Schedule and Other Changes to Part B Payment Policies [CMS-1734-P]. Comments specifically addressed ‘Evaluation & Management (E/M) Visits’ and ‘Audio-Only Visits.’ The Coalition will continue its advocacy efforts to ensure patients and families with serious and life-limiting illnesses have access to these critical telehealth services. Read the final letter here.
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MACRA Palliative Care Quality Measures Project Update
The MACRA Palliative Care Quality Measures Project received notification from CMS that funding for the final third year was accepted. This project is developing two measures to assess the quality of care provided by palliative care teams working in doctor’s offices and clinics. The measures fall under the category of “patient reported outcome performance measures” or “PRO-PMs” which are a new type of measure for palliative care providers to evaluate the quality of care they deliver based upon patient reported experience.
To develop these measures, the project team is currently fielding a survey that asks patients:
- how much they felt heard and understood by their palliative care doctor and team, and
- how much they got the help they wanted for pain.
This project (and the measures developed) will help:
- Patients - by offering a way to share feedback about the care they receive and learn where they can get the highest quality care.
- Health systems and insurers - to understand how well the care that is provided meets patients’ needs and preferences.
- Doctors and the palliative care interdisciplinary team - to improve the care they provide to their patients.
Learn more about this project…and stay tuned for more information about a public webinar and public comment opportunity in early 2021!
NCP Guidelines Highly Viewed on ECRI Guidelines Trust
Since published two years ago in October 2018, the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, (NCP Guidelines) continues to be one of the most viewed guidelines on the ECRI Guidelines Trust website.
The NCP Guidelines are available to download for free, purchase or view/search (e-pub format).Take advantage of the ‘Anniversary Sale’ (20% discount) and purchase copies for your team and organization.
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Coalition Sponsors Messaging Workshops Series for Members and Stakeholders
Thanks to the generous support of The John A. Hartford Foundation and the Cambia Health Foundation, the Coalition is sponsoring a special virtual workshop series, Improving and Aligning Messaging to Build Public Engagement and Access to Advance Care Planning, Palliative Care and Hospice.
The Coalition will host five interactive working sessions for our members and invited stakeholders to:
- Review the latest research and findings related to public messaging about the field,
- Understand the work behind new messaging principles developed by the field, and
- Consider how to integrate these new messaging principles to improve public understanding of serious illness and end-of-life care.
The Coalition will sponsor a free public webinar in Spring 2021 to present findings and key recommendations regarding revising and improving serious illness communication. Learn more about this broader effort to improve awareness and access to serious illness and end-of-life care.
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STAY INFORMED AND TAKE ACTION
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COVID-19 RESOURCES

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 member organizations to provide information and guidance to professionals in the hospice and palliative care field on the outbreak of COVID-19.
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