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Hospice and Palliative Care Coming Together for Ukraine

There is a lot of hurt, pain and distress in the world, in our own communities and for some of us in our very lives. Yet, there are times when we can come together and recognize the enormity of human suffering on a unique scale – a devastation that is happening right before our eyes. Yes, we may feel powerless to make a difference, yet we can do something.
Thank you to Coalition Member, the Social Work Hospice & Palliative Care Network (SHWPN) for helping to organize a unique and specific hospice and palliative care (#HAPC) response to help and support colleagues in Ukraine. SWPHN has identified verified contacts through the Ukrainian Association of Palliative and Hospice Care where they are in dire need of medical supplies for hospices, hospitals, and nursing homes that cannot evacuate/relocate patients in hospice or receiving other palliative treatments. These vulnerable patients and their families, as well as healthcare staff, are unable to leave the country while Russia is attacking. The head of the Ukranian Association of Palliative and Hospice Care is asking for donations to help obtain these needed medical supplies. SWHPN is serving as the collection point for monetary donations which will be transferred overseas and have been arranged to get these funds and supplies to the Ukrainian border. (100% of funds collected are being donated: No administrative fees are being deducted by SWPHN).
You can help by donating here.
There are many other reputable organizations that are on the ground helping the Ukrainian people directly. And yes, there other humanitarian crises in the world and here at home too, please consider giving what you can to those too.
Thank you for considering and in gratitude,

Amy Melnick, MPA
Hospice Changes Open for Public Comment
Last month, CMS released its annual proposed FY 2023 payment update for hospices, which includes a number of announcements and other policy changes. This proposed rule, open for comment until May 31, also includes a Request for Information as it relates to health equity and hospice. The Coalition is working with its members to provide feedback to CMS on these significant issues.
  • CMS proposed raising hospice payments by 2.7 percent, or $580 million, in fiscal year 2023. With inflation currently running at 8.5%, this will pose a severe challenge for hospices.
  • CMS has announced that a web-based methodology for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey is in process. This survey has historically been done on paper.
  • CMS is seeking comments from hospices on their health equity initiatives and considering a structural composite measure concept to inform future measure developments. CMS stated, “Health inequities persist in hospice and palliative care, where Black and Hispanic populations are less likely to utilize care and over 80 percent of patients are White.” CMS has also stated that “one important strategy for addressing these disparities is improving data collection to allow for better measurement and reporting on equity across our programs and policies”.
    • CMS is interested in hearing from individual hospices and national organizations that can share their strategies and commitment to addressing health disparities and offering meaningful suggestions for CMS to consider implementing nationwide.
More information on the Hospice Proposed Rule, FY 2023, can be found at the CMS FACT SHEET.  

Organizations Unite Behind Opioid Recommendations
CDC LogoThe Coalition has joined with the Patient Quality of Life Coalition in submitting comments to the Centers for Disease Control and Prevention on its new 2022 Clinical Practice Guidelines for Prescribing Opioids for Chronic Pain. These Guidelines are written to replace the 2016 Guidelines which have been proven to harm patients in need of pain management therapies. These guidelines exclude clinicians prescribing for “cancer pain treatment, palliative care, and end-of-life care.” The Coalition signed onto this joint letter with other organizations strongly encouraging CDC to widely disseminate these guidelines to ensure the old guidelines are no longer used or referenced in state, federal or private health policies that have been shown to negatively impact patients with serious illness. Letter HERE.
NQF News: Proposed New Measures
As the National Quality Forum nears approval of two new palliative care measures, there are two new publications that explain where these measures came from and how integral the patient voice was to their development. The Coalition has been a critical partner in this work to Measuring What Matters Most to Patients.
Now, in a continuation of a featured blog post from the American Public Health Association, the importance of these measures is furthered explained by Focusing on Patients and Caregivers.
During this NQF measure cycle, measure #3645, Hospice Visits in the Last Days of Life is also being considered for NQF endorsement. Although the Coalition is fully supportive of the measure concept, (visits from the interdisciplinary team in the last 3 days of life), the Coalition expressed concern that, as proposed, this measure excludes chaplain and physician visits (RN and social worker only), excludes telehealth visits and does not provide an option for families to decline a visit. Final NQF decisions on endorsement for all three measures is expected early this summer.
Pediatric Clinical Training Recommendations Released
New clinical training recommendations for all clinicians caring for neonates, perinates, infants, children, adolescents, and young adults with serious illness and/or complex needs have been developed collaboratively and released by the Center to Advance Palliative Care (CAPC), in partnership with the National Pediatric Palliative Care Task Force. The recommendations, along with tailored learning pathways, are now available here.

2022 Spring edition of the National Pediatric Palliative Care Task Force's quarterly newsletter, PPC NOW, is now available. It highlights updates on Task Force activities and state and federal legislative actions, parents’ perspectives on how the field can better support bereaved parents who are expecting, and the launch of our new alliance with the Pediatric Palliative Care Webinar Series featuring free – that’s right free - access to one of their groundbreaking webinars. PPC NOW here.

To subscribe click here.

If you have suggestions for future issues of PPC NOW, we would appreciate hearing them. Please email
Sign up HERE to receive PPC NOW
National Academies of Sciences Caregiving Workshop Features Coalition Volunteer
Workshop Logo
National Academies in Washington DC will be hosting a free Workshop (virtual and in-person) on
Family Caregiving for People with Cancer and Other Serious Illnesses, on May 16-17. This workshop will examine barriers, challenges and opportunities to better support family caregiving. Discussions (with audience participation) will focus on:
  1. Strategies to better capture, understand, and act on family caregiver input and experience to improve patient care and to support family caregivers
  2. Research gaps and opportunities to improve the evidence base to guide caregiving
  3. Potential policy opportunities to support family caregivers and advance family-centered care for serious illness, including new models of care delivery and payment.  
Danelle Shu PhotoFamily caregiver and member of the National Pediatric Palliative Care Task Force, Dannell Shu, Minnesota, will be a featured speaker at this Workshop and Amy Melnick, Executive Director of the Coalition will be co-moderating the policy session.

Survey Opportunity - Palliative Care: Please Share
Coalition Member, NHPCO is leading a national effort to expand access to community-based palliative care. Seeking palliative care and hospice programs to complete the 2022 NHPCO Palliative Care Needs Survey. The survey examines who is providing, or considering developing, palliative care services; what barriers to development or sustainability providers are experiencing; and what resources are needed to help expand access to community-based palliative care.
All are welcome to participate regardless of NHPCO membership status. 

An overview of the results will be shared with the field once analysis is complete.

Impact Report: Read and Share
Impact Report Cover
Special Pricing for NCP Guidelines
Grab a hardcopy of the Coalition’s most popular and most cited publication, National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th ed (NCP Guidelines) at our new special discounted price of $25. To order a copy, CLICK HERE.

For bulk orders of 5 copies or more and discounted shipping rates email

As always, the NCP Guidelines are also free to download.
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