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MESSAGE FROM OUR EXECUTIVE DIRECTOR
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Cooperation. Communication. Collaboration. That is the unofficial “tagline” for our Coalition and what guides us each and every day. With this deliberate and focused commitment to personal and organizational cooperation, communication, and collaboration our Coalition can achieve great things on behalf of the field and the patients, families and caregivers we serve.
“The best way to find yourself is to lose yourself in the service of others.”
- Mahatma Gandhi
A dedicated subset of our Coalition, representatives from nearly each Coalition member, worked over several months to develop a set of policy recommendations delivered to the new Biden-Harris Administration and to Congressional leaders. These health policy recommendations will help guide the Coalition this coming year towards enacting legislation and implementing regulations that improve access and quality of serious illness care.
These Coalition values are embodied in one of our Coalition Founders who recently announced her transition from leadership at one of our founding organizations.
 Diane Meier, MD, Director, Center to Advance Palliative Care, has spent her career asking to change “what is” to what “should be.” As one of the original authors of the first edition of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care (published in 2004) and involved in each subsequent edition, Diane was also instrumental in forming the Coalition shortly thereafter. She knew that only by bringing the right people and organizations together could the vision of improving serious illness care be achieved over time. Under her leadership at the Center to Advance Palliative Care (CAPC) the number of palliative care programs in U.S. hospitals has tripled in the last twenty years-helping thousands of patients live a better life with serious illness.
She is a nationally recognized expert, mentor to countless in the interdisciplinary palliative care field, and a friend to so many. Diane is passing the baton to the next generation of leader - the extraordinarily talented and capable Brynn Bowman, MPA, to lead CAPC and serve on the Coalition Board. For those of you who know Diane, we know that this next chapter of her remarkable life will be marked by her commitment to helping create a world that “should be” vs “what is” and that she will likely embrace Martin Luther King Jr’s words “Our lives begin to end the day we become silent about things that matter.”
Thank you, Diane, for your extraordinary career and dedication to improving patient care. The Coalition is here to partner with you as you set your sights on what’s next.
Amy Melnick, MPA
Executive Director
National Coalition for Hospice and Palliative Care
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PULSE CHECK
What are you reading or binge watching?
ANSWER HERE.
Why are we asking you this? The Coalition recently hosted a “Leadership Convening” with our members. For introductions, we asked the same question and received some great recommendations so we would like to hear yours too.
We will post the results in our next issue of Coalition Edition!
Results from our previous January pulse check re: COVID-19 vaccination: 53% received the vaccine; 71% plan to get the vaccine. As a reminder, the Coalition encourages all health care providers (unless contraindicated) to become vaccinated. Read the Coalition’s statement about vaccinations here.
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Coalition Renews DEI Commitment
As mentioned in our Coalition Edition, January issue, the Coalition is renewing our commitment to be more diverse, equitable and inclusive (DEI).
Register for “Conversations with Coalition Leaders:
An Advocacy Town Hall,” April 7th, 12-1 pm ET
 Join us for this very informative (and free!) Town Hall that will feature national policy and advocacy Coalition leaders providing insights and perspectives on the new Biden-Harris Administration and the 117th Congress, including:
- How health care policy will be changing,
- Potential legislative and regulatory opportunities for the field,
- Impact of new Congressional leaders and appointed officials, and
- The importance of advocacy to achieve shared policy goals to improve equitable access and quality of care.
Learn more and register HERE.
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Coalition Submits Comprehensive Policy Recommendations to the New Biden Administration and Congressional Leaders
 On February 9, 2021, the Coalition submitted a set of comprehensive policy recommendations to the 117th Congress and the Biden Administration to improve access and quality of serious illness care in the United States. The legislative and regulatory recommendations were developed by leaders from all 13 Coalition member organizations that included:
- Priorities to Address the COVID-19 Crisis
- Expanding Access through Medicare Payment Changes
- Preserving Access to Opioids for the Seriously Ill Population
- Building and Sustaining the Hospice and Palliative Care Workforce
- Bolstering Palliative Care Research
Read the full letter and details of each recommendation.
Coalition Members meet with CMS re: Hospice Survey Legislation
On January 29, 2021, the Coalition convened a meeting with officials from CMS and representatives from the Coalition to better understand new policy provisions re: hospice surveys that was included in the H.R. 133, the Consolidated Appropriations Act, 2021 (which became public law on December 27, 2020). Leaders from Coalition member, Social Work Hospice and Palliative Care Network, were in attendance and published a blog about this meeting. Read details here.
The Coalition also submitted a letter to CMS summarizing key recommendations as they work towards implementing the hospice changes now required by law. The Coalition supports an interdisciplinary approach to establishing survey teams from various hospice disciplines such as social work and chaplaincy.
Coalition Submits Request to the Biden Administration to Rescind Executive Order Combatting Race and Sex Stereotyping
 On January 20, 2021, the Coalition submitted a letter to newly elected President Biden to immediately rescind the Trump Administration’s Executive Order 13950, which places harmful restrictions on the ability of federal contractors, grantees, and civilian and military personnel to engage in essential diversity training necessary to understand and address factors contributing to disparities in healthcare access and outcomes, including based on race, ethnicity, gender, gender identity, and sexual orientation. The Biden Administration rescinded this Executive Order shortly after taking office.
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New Proposed Palliative Care Measures Featured in Webinar and CMS Public Comment Period
After two and a half years of developing two new patient-reported experience measures that assess the quality of care provided by palliative care teams working in doctor’s offices and clinics, the Palliative Care Measures Project provided two opportunities for providers, clinicians, patients, caregivers and more to learn more about this effort and provide input.
- A free public webinar, Launching the Future of Palliative Care: Patient-Reported Experience Measures, was held February 1, that highlighted the development of the two measures, testing results, how the measures can be implemented and the public comment period. Hear the webinar recording and view the slide deck.
- An official Public Comment Period for the two proposed measures was held February 1-March 2 which was also posted by CMS. Over 200 surveys were completed from people and caregivers living with serious illness, patient advocates, clinicians caring for those with serious illness and other health care professionals. A summary report will be published later this year. Thank you to the ALL who responded to the survey and gave feedback!
Learn more about this project HERE.
Free NCP Guidelines PowerPoint with Speaker Notes Available
 Since its publication in 2018, over 44,000 copies of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, (NCP Guidelines) have been downloaded or purchased.
To help educate your staff and organization about quality palliative care, a ready-made PowerPoint with speaker notes and other educational resources are available to download and use at no cost. A pediatric version of the PowerPoint is also available. Here’s how others reported using the NCP Guidelines PPT:
- Educating clinical leadership and staff
- Determining quality metrics for 2021
- Implementing the Guidelines into my organization
- Teaching a graduate level palliative care course
Learn more about the NCP Guidelines HERE.
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PEDIATRIC PALLIATIVE CARE TASK FORCE
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PPCTF Advocates for Pediatric Patient-Reported Measures
 The Task Force recently submitted a letter of support to the Centers for Medicare and Medicaid Services (CMS) that included:
- Commending the agency for funding the development of two patient-reported quality measures for palliative care services for patients age 18 years and older and committing to disseminating these measures among our field.
- Advocating for CMS to fund and conduct a similar effort to develop pediatric patient-reported measures and caregiver proxy tools which assess how well pediatric palliative care clinicians deliver palliative care to children with serious illness and their families.
Learn more about the PPCTF and its work HERE.
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New PPCTF Quarterly E-Newsletter
The Pediatric Palliative Care Task Force is excited to announce the first edition of our new quarterly e-newsletter will premiere in April 2021! The online publication will feature:
- Updates on the Task Force goals and activities,
- Opportunities for solicited feedback to inform our activities, and
- Relevant PPC educational opportunities, research, and resources.
Sign up HERE to receive the e-newsletter.
Please share with your networks - #pedpc
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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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