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SEPTEMBER 2020
Message from Coalition Executive Director and Coalition Manager, Operations and Special Projects

“We will have to repent in this generation not merely for the hateful words and actions of the bad people but for the appalling silence of the good people.” 
--Dr. Martin Luther King Jr.

In our July issue, we highlighted our Coalition’s statement to take specific antiracist action and to address implicit and unconscious bias within hospice and palliative care delivery and the profession itself.
                                                                                      
                                   Rev. Inetta Reddell, MBE, MACS, MDiv, BCC           Rev. Dr. Jeffery T. Garland, DMin, EdS, BCC               
During our Coalition meetings these past two months, we were fortunate and deeply humbled to hear from representatives from Coalition Members and liaisons from the Association for Professional Chaplains who shared their personal and professional experience with racism and implicit bias. I want to thank Rev. Inetta Reddell, MBE, MACS, MDiv, BCC and Rev. Dr. Jeffery T. Garland, DMin, EdS, BCC for their honest, transparent and candid perspectives and personal reflections about their specific experiences with the insidiousness of institutional racism and stories from their fellow BIPOC (Black, Indigenous, and People of Color) colleagues, friends and family members. The impact of white silence and complacency at maintaining the status quo – in our workplaces, health care institutions or in our nations police precincts must end.

Based on our continued discussions among our members, the Coalition is committed to the integration of diversity, inclusion and equity within the work of the Coalition and are now actively working to make space for the voices of those who have been historically unheard due to structural racism or bias. The twin epidemics of COVID-19 and structural racism has laid bare the undeniable health inequities in our nations.


Where do we go from here?

"It is not your responsibility to finish the work of perfecting the world, but you are not free to desist from it either." 
--Rabbi Tarfon, Pirke Avot 2:21

We recognize this work is long overdue, not easy, and will require dedicated and multi-faceted commitments and resources.

In the short term, our Coalition pledges to: 

  • Assess our current strategic priorities and projects to insure our work holds to the standards of diversity, equity and inclusion as we continue to ensure that patients, families and caregivers who need it will have access to quality hospice and palliative care;
  • Recruit and seek BIPOC leaders and individuals within the Coalition for leadership and speaking opportunities;
  • Seek diverse voices and representation for external nomination opportunities;
  • Work together to define actionable and specific diversity, equity and inclusion goals
  • Survey our membership and review work currently underway in the field in this area.
We are seeking partners and other Coalitions in this work to improve access to palliative care and hospice for diverse populations and improve overall health equity for Black, Indigenous, People of Color (BIPOC) populations. We are exploring national health equity efforts to partner with other national coalitions or organizations who are leading in this effort.

NEW Diversity, Equity and Inclusion Resource Page
This survey has led to the creation of the Coalition’s compilation of our members’ diversity, equity and inclusion work here:
www.nationalcoalitionhpc.org/dei 

Now, we’d like to hear from youspecifically what you/your organization are doing to address systemic racism and bias within your workplace and community. Below is a link to a brief survey. All responses will be anonymous and confidential, and we will provide a summary of the feedback we receive in our November issue of Coalition Edition.

Thank you for all you are doing to demand justice, systemic and structural change.
                                
                                                  Amy Melnick, MPA                                                Cozzie King
                                                          Executive Director                                                  Manager, Operations and Special Projects
SPECIAL POLL
Please answer one question to help us inform the field about how to address systemic racism and implicit bias. Your response will be anonymous, and a summary of all responses will be included in our next issue of Coalition Edition!
 
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?

>>>TAKE THE POLL<<<
PEDIATRIC PALLIATIVE CARE TASK FORCE
 
New Members and Co-Chairs Announced for the Coalition’s Pediatric Palliative Care Task Force
The National Coalition for Hospice and Palliative Care is pleased to announce the inaugural members of the national Pediatric Palliative Care (PPC)Task Force. The Coalition board appointed Cheryl Ann Thaxton, DNP, (HPNA) and Rachel Thienprayoon, MD, (PCQC) to serve as co-chairs of the Task Force. Information on members and alternates can be found here.
 
                 
Cheryl Ann Thaxton, DNP, (HPNA)     Rachel Thienprayoon, MD, (PCQC)

Members of the inaugural Task Force represent the Coalition’s 13 membership organizations, the American Academy of Pediatrics and three family advocates.

The members of the Task Force are nationally-recognized interdisciplinary leaders in pediatric palliative care, and we are exceedingly grateful for their willingness to give of their time and expertise,” stated the Coalition’s Executive Director Amy Melnick. “We are also honored to have Dr. Thaxton and Dr. Thienprayoon spearheading this effort and are confident that under their guidance, the Task Force will make great strides towards increasing children’s access to critical pediatric palliative care services.”

To sign up to receive periodic updates on the work of the PPC Task Force, please email peds@nationalcoalitionhpc.org.

We need your HELP!
Calling all pediatric palliative care advocates and leaders! With the launch of the national PPC Task Force, the Coalition is expanding its website to spotlight pediatric palliative care resources, upcoming educational opportunities, and research and field activities.

Please contact
peds@nationalcoalitionhpc.org with your ideas and suggestions!

All work related to this new Task Force can be found at www.nationalcoalitionhpc.org/pediatric.
ADVOCACY: COVID-19
Register for the Coalition’s Fourth COVID-19 Town Hall
Conversations with Coalition Leaders: Acknowledging and Adapting to the New Reality – Impact on the Interdisciplinary Team

The Coalition is hosting a series of virtual COVID-19 Town Halls, “Conversations with Coalition Leaders each featuring various interdisciplinary Coalition leaders providing perspective and insight facing the field during the COVID-19 pandemic. REGISTER HERE

Town Hall Graphic
 
  Also, hear the recordings for past Town Halls:
  • July 27: Addressed IDT changes in response to the pandemic, how to best serve communities of color, and how to prepare for the continuation and shifting of the pandemic around the country.
  • June 11: Addressed how the pandemic has changed the delivery of palliative care and hospice, with special emphasis on the role of chaplaincy and the need for psychosocial support.
  • April 2: Addressed the current impact of the pandemic on hospice and palliative care providers and information on associated policy and legislative changes.
QUALITY
Coalition Members Appointed to NQF Leadership Roles
One of the main coordination activities of the Coalition is nominating representatives for various committees of the National Quality Forum (NQF). The following selections, nominated by the Coalition, were recently announced: See the complete National Quality Forum Rosters. Congratulations to the organizations and individuals selected to these national committees and thank you for taking on this important volunteer role to improve quality hospice and palliative care!

macra LOGO
 
MACRA Palliative Care Quality Measures Project Update
The MACRA Palliative Care Quality Measures Project is wrapping up its second year of a three year effort to develop the two patient experience 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.
Since the COVID-19 pandemic has had a significant impact on providers, patients and families, there was a pause in the project’s data collection phase. After careful consideration and input from providers who are serving as testing sites, the project team is pleased to announce that data collection has been resumed with plans to continue through January 2021 in order to establish reliable, valid, and useful measures of patient experience of outpatient palliative care.

Also, from the preliminary data received, several participating test sites reported a significant increase in the use of telehealth for outpatient palliative care. The survey and data collection materials have been adapted to capture some information on telehealth use and experience, to better understand if and how the proposed measures could be used or telehealth visits in the future.

Thank you to all the outpatient palliative care providers who are serving as test sites for your continued participation in this important measure development effort!

Learn more about this project and look out for a public comment opportunity in 2021!
 

New Issue Brief Released by the NQP Action Team to Co-Design Patient-Centered Health Systems
This past year, the National Quality Forum (NQF) brought together 29 member organizations representing diverse stakeholders to convene the National Quality Partners (NQP) Action Team to Co-Design Patient-Centered Health Systems. The Coalition was honored to be included as a stakeholder and Cozzie King, Coalition Operations and Special Projects Manager, served as the Coalition’s representative.

The NQP Action Team met over a series of eight months to identify and share actionable strategies and practices that organizations can use to create and advance a culture that embraces co-design in quality and safety initiatives.

An Issue Brief was recently released to inspire action from those in the healthcare field by highlighting key themes and opportunities stemming from the NQP Action Team discussions. Also, access their webinar materials, Action Team roster, FAQs and other resources here.
STAY INFORMED AND TAKE ACTION
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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