Gratitude to Coalition Member and Partner AAHPM: Working Together To Elevate The Patient and Caregiver Voice
This month, the CMS funded Palliative Care Measures Project is coming to an end of its funding cycle, however, the goal of implementing patient reported experience palliative care measures is just beginning. The Coalition wants to thank the leadership of the American Academy of Hospice and Palliative Medicine (AAHPM) for boldly initiating, pioneering, and leading this monumental effort that was the first of its kind for the palliative care field.
 
Over the course of three years, two patient reported experience measures re: effective symptom care and communication were developed and rigorously tested “by the field for the field” with substantial input from patients and caregivers all along the way, thanks to our unique partnership with the National Patient Advocate Foundation (NPAF).
               
The measures apply a person-centered approach that recognizes the person beyond the disease and prioritizes peoples’ health concerns as they see them and address the most significant gaps in care today. All information related to the project and these measures can be found at the newly redesigned
Palliative Care Measures Project webpage.
 
It has been a privilege and an honor for the Coalition to be a partner on this project and lead the way with stakeholder engagement activities and communication.

Thank you!
Amy Melnick, MPA

Coalition Forms New Equity & Inclusion Workgroup 
Addressing diversity, equity, and inclusion (DEI) issues within our field is a top priority for the Coalition team, members, and stakeholders. Coalition Board and membership conversations as well as our current strategic planning process have further stressed the need to revise our Vision, Mission, Principles & Values and Strategic Priorities through a DEI lens.
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The Coalition is pleased to announce our new Equity & Inclusion Workgroup that will serve to advise, recommend, and take specific action on regulatory, legislative, quality, workforce, research, and other issues related to DEI. This workgroup will specifically discuss questions, comments, and concerns re: DEI efforts within the hospice and palliative care field and share best practices among the Coalition member organizations. More details will be provided in our next issue of the Coalition Edition.

“There are diversity, equity and inclusion (DEI) issues specific
to palliative care and end-of-life care. What is ours to do?”
—Coalition Stakeholder Interviewee

Coalition Unites Behind Hospice Recommendations to CMS
On August 27^th, the Coalition submitted comments to the Centers for Medicare and Medicaid Services (CMS) re: the hospice survey reform and enforcement remedies provisions contained in the Calendar Year 2022 Home Health Prospective Payment System proposed rule, also known as CMS-1747-P or the Home Health proposed rule. Feedback and recommendations to CMS were focused on several key areas including the need to support effective public reporting, the establishment of a technical expert panel, and the use of multidisciplinary survey teams. Read the entire set of Coalition comments HERE.

Coalition Endorses Community Based Palliative Care Legislation, Applauds Introduction
The Coalition and our 13 national organizational members voted unanimously to endorse the bi-partisan “Expanding Access to Palliative Care for Seniors Act” introduced by the Co-Chairs of the Senate Comprehensive Care Caucus, Senators Rosen (D-NV), Barrasso (R-WY), Baldwin, (D-WI) and Fischer (R-NE) on July 29. The proposed new legislation, S. 2565, would direct the Center for Medicare & Medicaid Innovation (CMMI) to develop a demonstration of a community-based palliative care payment and delivery model. The Coalition has been working on both a regulatory and legislative strategy to expand access to community based palliative care. Read the Coalition’s Press Release.

Coalition Endorses CONNECT for Health Care Act of 2021 re: Telehealth Coverage
The Coalition, along with over 150 other advocacy and health organizations, endorsed “Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2021” (S. 1512) that aims to permanently remove barriers to telehealth coverage. The Act acknowledges that practitioners can provide high-quality telehealth services in a safe and effective manner and seeks to promote higher quality of care, expanded access to telehealth services, and reduced Medicare spending through relaxation of current reimbursement rules and expanded coverage of additional telehealth services. This bill seeks to make permanent many of the changes CMS made during the COVID-19 public health emergency. See The National Law Review article summarizing the Bill.
 

Palliative Care Measures Project Update
The Palliative Care Measures Project is officially ending its three-year measure development process that was funded under the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). This collaborative effort developed and tested two new patient reported experience measures are that are now available for palliative care and other healthcare clinicians to implement in their practice:  

1. How much patients felt heard and understood; and
2. If patients got the help the wanted for their pain.

Both measures are being submitted for endorsement from the National Quality Forum (NQF) during the fall 2021 review cycle.

See more information on the Project’s revised website, that includes:

• Measure descriptions
• Journal publications
• Patient-centered development process
• Why use the measures
• How to use the measures

PPC Now New Issue Available and Task Force Updates
The August edition of PPC NOW, the National Pediatric Palliative Care Task Force's quarterly newsletter, was recently published and features timely and relevant pediatric palliative care news including updates from the Task Force Workgroups (Payment & Financing, Needs Assessment, and Knowledge & Awareness) as well as:

• Dr. Lisa C. Lindley writes about opportunities to enhance pediatric hospice and concurrent care by leveraging the early and periodic screening, diagnostic, and treatment (EPSDT) benefit,
• Dr. Tammy Kang (AAHPM Task Force representative) talks about the dramatic rise in pediatric hospital admissions from the delta variant and the role of palliative teams in supporting self-care among pediatric colleagues, and
• Liz Morris, from our partner the Courageous Parents Network, shares about the importance of language and how the words we use can either invite or rebuff parental agency and empowerment.

Subscribe to PPC NOW and share with your colleagues.
 
Other current activities of Pediatric Palliative Care Task Force include:

• Advocating for CMS to fund the development of pediatric patient-reported palliative care measures, similar to those recently developed for adults, and for the inclusion of a pediatric pilot under the proposed Home and Community-based Service Act;
• Partnering with national organizations to inform and develop educational training guidelines and to advance pediatric palliative care internal and external initiatives; and
• Raising awareness about pediatric palliative care via presenting at national conferences, meetings, grand rounds and webinars.

 Learn more about the National Pediatric Palliative Care Task Force.

Dr. Betty Ferrell Honored as AAN Living Legend
Congratulations to Betty Ferrell, PhD, RN, CHPN, FAAN, FPCN, who will be designated as one of four extraordinary nurse leaders as a “Living Legend” by the American Academy of Nursing this fall. In addition to Betty’s many accolades, she served as the Steering Committee Co-Chair for the Clinical Practice Guidelines for Quality Palliative Care, 4th edition as well as the previous three editions.
 
Read more about Betty’s leadership and innovation and how she has made a lasting policy impact and significantly advanced quality palliative and end-of-life care.
 
AAHPM CEO Recognized as a ASAE Fellow
Congratulations to Wendy-Jo Toyama, MBA CAE, American Academy of Hospice and Palliative Medicine’s (AAHPM) Chief Executive Officer and Coalition Board Member and Secretary, for being recognized as a Fellow of the American Society of Association Executives (FASAE). The ASAE Fellows program annually bestows this honorary recognition upon exceptional association leaders making noteworthy and sustained contributions of leadership to their organizations, ASAE and the association management profession.

Dealing with Grief Videos Available
To help address the complex trauma resulting from the COVID-19 pandemic, the Hospice and Palliative Nurses Association (HPNA), in collaboration with the Hospice and Palliative Nurses Foundation (HPNF), Social Work Hospice and Palliative Care Network (SWHPN), Association of Professional Chaplains (APC), and Oncology Nursing Society (ONS), developed a series of five short, powerful videos.
 
The videos aim to provide practical information about grief to help clinicians care for the physical, emotional, psychological, and spiritual needs of patients and their families, and include:

1. Processing Grief as a Team
2. Cumulative Grief
3. Supporting the Grief Process When Significant Others Are Not at the Bedside
4. Processing Grief With So Much Happening In Your Day
5. The Four Things That Matter Most

Each complimentary video is approximately five minutes in length and includes a downloadable resource guide that are available HERE.

NCP Guidelines: Ready-Made PowerPoints Available
The National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, (NCP Guidelines) creates 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.
 
To help educate your staff and organization about the eight domains from the NCP Guidelines, a ready-made PowerPoint with speaker notes and a pediatric version are available to download at no cost.