Friday, February 16, 2024

One Year in Hospice Care: What Jimmy Carter is Showing Us

By Ben Marcantonio, NHPCO COO and Interim CEO


February 18, 2024 marks one year since President Jimmy Carter began receiving hospice care at home and generously shared that information with the American public. In that year, President Carter and his family have continued to share pieces of their experience with us, helping to shape the public’s understanding of what hospice care can offer patients and families. They have brought hospice care into the public eye and into our national conversation to a degree that rarely happens.  

 

The Carters spearheading this change in awareness aligns with the many ways in which they have impacted public health throughout their lives. Rosalynn Carter’s focus on mental health shifted the dialogue in the United States, and the positive ripples of her work continue to inform our approach to mental health today. The Carter Center has led the global effort to fight Guinea worm disease, and it is now on the cusp of being the second-ever disease to be eradicated. And, it was under President Carter’s leadership that the idea of government-supported hospice care was first tested. That demonstration project led to legislation, passed by Congress and signed into law by President Reagan, that formalized the Medicare Hospice Benefit. In other words, with hospice care, President Carter is living the last stage of his life in a way that matches his values. As President Carter’s grandson, Jason Carter, recently said about his grandfather’s end-of-life journey: “He is living this part of his life, as part of that same faith journey that he’s been on for his whole life.” 

 

The hospice structure President Carter helped create has enabled about 30 million Americans over four decades to choose the support of hospice at the end of life. Of course, not everyone who receives hospice lives for a year. Six percent of patients are in hospice care for 365 days or more, while 10% receive up to two days of care and 25% receive up to five days of care. Hospices help patients at any length of stay, but President Carter’s story reinforces something we hear so often from patients’ families and from hospice providers: the wish that more people found hospice earlier, so they could benefit from more care and support 

 

Over the years, Americans’ awareness of hospice has grown, and more people have chosen hospice care. Today, about 1.5 million Americans make that choice each year. It’s reasonable to assume that the Carters’ choices to receive hospice care and to share that information with all of us will mean that more people consider and choose hospice as an option for their own end-of-life journeys.  

 

What will it mean if more people choose hospice? Let’s look to the Carters as a guide. We know some of what President Carter’s life has been like over the last year. At the beginning of his care, he would have had conversations with members of the hospice interdisciplinary team (including medical, social, and spiritual care professionals) about his values and goals for his care. The hospice team would have developed a care plan tailored to the patient based on those conversations. If he is experiencing pain or discomfort, we know the hospice team would be working to minimize the pain or discomfort, and to make him as comfortable as possible. His care would be overseen by a physician specializing in hospice care, and he would be visited and checked on regularly by hospice nurses, aides, and volunteers, and very likely by social workers and spiritual caregivers (if that was part of his individualized care plan), and possibly by specialized therapists such as massage or music therapists.  

 

From stories members of the Carter family and friends have shared with the press, we know President Carter, the longest-living president in American history, has been enjoying his favorite treat: peanut butter ice cream. During baseball season he watched his beloved Braves on TV. He watches the livestream of his niece teaching the Sunday school class that he used to teach. We know he has had visits, calls, and prayers with friends, including Ambassador Andrew Young, and several-times-per-week visits from Jill Stuckey, the superintendent of the Jimmy Carter National Historic Park. President Carter’s children have a rotation for spending time with him.  

 

He has continued following the news and current events, and has even thought about ways he might be helpful to advancing peace, something he has done throughout his life. In October, President Carter celebrated his 99th birthday. Tributes, well-wishes, and accolades poured in from around the world, and we know he was able to enjoy those. Similarly, President and Rosalynn Carter celebrated their 77th wedding anniversary in July. We know that while she was still living, the two of them spent much of their time sitting next to each other in the living room of their longtime home in Plains, GA, holding hands. When Rosalynn Carter died in November, we all watched as President Carter traveled and attended services to celebrate the love of his life and honor her memory. Those photos and videos were a testament to an incredible love story and to the inner strength of Jimmy Carter. They were also a powerful visual of what is possible when someone has the right care model, including the support of hospice.  

 

President Carter is showing us an amazing example of what it means to live out the end of one’s life in a way that is in keeping with the entirety of one’s life, and to experience life to the fullest, even as you prepare to die. What that means is different for everyone, as we are all unique individuals, but we should each have the opportunity to create the end-of-life journey that is right for us. Hospice care does that for millions of Americans 

 

Please join NHPCO in thanking President Carter for lighting the way for all of us. Learn more here and share your thoughts on social media using the hashtag #CandlesforCarter.  




Thursday, December 21, 2023

The National Hospice and Palliative Care Organization’s 2023 In Review

The year is coming to a close and it’s been a busy one for NHPCO staff and members across the nation. While the NHPCO team is proud of the 2023 accomplishments outlined below, we didn’t achieve them on our own. Our work is made possible by our members, through support in the form of belonging to NHPCO, direct service on NHPCO committees, councils, and boards, and via ongoing feedback and participation in our various requests for input, networking calls, office hours, and online courses. While there is far more to reflect on than can be captured in a short blog post, here are twelve standout accomplishments from the year.

Value of Hospice in Medicare Report

In March of 2023, NHPCO, in collaboration with NAHC, released research conducted by NORC at the University of Chicago which demonstrates patients’ use of hospice care contributed to $3.5 billion in savings for Medicare in 2019, while providing multiple benefits to patients, families, and caregivers. Access the report on this NHPCO webpage, read the press release, or learn about the congressional briefing on the value of the benefit held in July of this year. 

Former President Jimmy Carter’s Courageous Choice to Share His Hospice Election Publicly 

In February, Former President Jimmy Carter and his family chose hospice care for his end-of-life journey and announced this decision to the world. By sharing that choice publicly, the Carters have sparked a national conversation and countless private ones about the value of hospice. Read more about NHPCO’s NYC August event to acknowledge six months since former President Jimmy Carter entered hospice care and the most recent NHPCO Updater blog post by NHPCO’s Interim CEO, The Carters Are Showing Us What Hospice Means.

Rosalynn and Jimmy Carter have captured the hearts and mind of a nation and as a result, dozens of articles and episodes have been written and released addressing the myths and misconceptions of hospice care which have been invaluable in educating the public about the hospice benefit. A few standout examples include:

Program Integrity

The Department of Health and Human Services (HHS) acted on 17 of the 34 hospice program integrity recommendations NHPCO and other leading organizations made earlier this year to protect the integrity of the hospice community. NHPCO celebrated success on behalf of the ideals at the heart of the hospice—high quality, person-centered, interdisciplinary care.

1.      2023 NHPCO Annual Leadership Conference

As the first in-person conference NHPCO hosted since the COVID-19 pandemic began, the rebranded 2023 NHPCO Annual Leadership Conference (ALC2023) brought together over 900 hospice and palliative care leaders and aspiring leaders working to advance the field of hospice and palliative care. Read a summary of the conference’s events or learn about what ALC2024 has in store. 

1.      Hospice Action Network’s Hospice Action Week

In June, more than 70 hospice and palliative care advocates from across the country met with over 130 congressional offices to discuss key legislative and regulatory priorities for ensuring and expanding access to hospice and palliative care. The meetings were part of Hospice Action Week, hosted in Washington, DC by NHPCO and its advocacy affiliate, the Hospice Action Network (HAN). 

1.      Quality and Innovation Network Launch

In 2023, NHPCO launched a new quality program, the Quality and Innovation Network. This program brings together a community of providers committed to establishing a culture of quality within their organizations and facilitates collaboration across providers nationwide through monthly virtual working sessions and NHPCO’s expert support. 

1.      CaringInfo.org Launches in Spanish

CaringInfo.org is a program of NHPCO that provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. In October, NHPCO announced the launch of the CaringInfo.org website in Spanish. All pages and advance directives on the website are available in translation and NHPCO will continue to translate any new site additions. 

We Honor Veterans Launches New Resource Webpages

In 2023, the We Honor Veterans launched two new website sections, Psychedelic-Assisted Therapy and Caring for Veterans and Women Veterans and End-of-Life Care. The psychedelic-assisted therapy page defines the practice, covers studies and emerging organizations in the field, catalogs other sites with additional information, and discusses some of the policy efforts currently underway. The women Veterans page, created in collaboration with Dr. Qwynn Galloway-Salazar – a U.S. Army Veteran – outlines the unique experiences and needs of women Veterans at the end of life, including unique risk factors, circumstances, and strategies for appropriately engaging these Veterans. 

1.      Project ECHO 2023 Series: Equity Where It Matters

Project ECHO is an innovative program designed to create virtual groups of learners by bringing together healthcare providers, subject matter experts, and the wider community using case-based learning and fostering an “all teach, all learn” approach. The 2023 NHPCO Project ECHO curriculum focused on inclusive topics addressing various aspects of diversity and cultural competence in healthcare. Individuals who completed the curriculum earned a certificate in diversity, equity, and inclusion for hospice and palliative care.

1.      National Hospice and Palliative Care Month – Courageous Conversations

The 2023 NHPCO theme for National Hospice and Palliative Care Month (HAPCM) was Courageous Conversations. The campaign encouraged everyone to engage in Courageous Conversations to start a meaningful dialogue on dying a good death, and NHPCO offered an extensive resource library to members who wanted to participate in the campaign. NHPCO enjoyed wide participation from members across social media and through local events. 

1.      New NHPCO Quality Member Resources

Throughout 2023, the NHPCO Quality and Regulatory teams were hard at work creating valuable, members-only resources on a wide variety of topics from workforce training to enable high-quality care to comprehensive guides that help your organization navigate reporting requirements. Review the list of top resources below and access all of these materials on the NHPCO Quality Resources webpage.

  • NHPCO Care Planning Primer and Tip Sheet
  • Telehealth Toolkit – best practices for Administrators and Clinicians
  • Interdisciplinary Hospice Onboarding and Orientation Guide
  • Charting a Course to Quality – A Consumer Guide to Publicly Reported Quality Measures
  • Charting a Course to Quality – HQRP Comprehensive Resource Guide
  • Measures of Excellence National Report
  • STAR National Report

1.      2023 Facts & Figures Report

In December, NHPCO published its 2023 edition of Facts and Figures, an annual report on key data points related to the delivery of hospice care, including information on patient characteristics, location and level of care, Medicare hospice spending, and hospice providers. NHPCO Facts and Figures is the leading resource for hospice providers and others interested in understanding the work of the community.

________________________________________

Looking to 2024, we are excited about expanding the resources and advocacy we provide the serious-illness home care community. In August of 2023, the NHPCO and National Association for Home Care & Hospice (NAHC) boards agreed to pursue a new, combined organization. All updates about the merger have been and will continue to be included on this webpage about the new organization. The webpage also includes a list of notable press.

As a united organization and community, we will be even better equipped to fulfill our mission of leading and mobilizing the transformation of care delivery to ensure equitable access to high-quality, interdisciplinary, person-centered care for those living with serious illness. In the meantime, as we work toward this future organization, NHPCO will continue to deliver expert resources, guidance, education, and advocacy on behalf of our members nationwide. We’re glad to have you along for the journey. 

1.