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.  

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:

• NPR Morning Edition – What does it mean to offer compassionate care for people facing the end of life?
• The Washington Post – Carters’ journey highlights tough questions about when to choose hospice
• USA Today – Rosalynn and Jimmy Carter bring needed attention to hospice care – and questions
• The New York Times – Americans Glimpse Jimmy Carter’s Frailty and His Resolve
• The Hill – How Jimmy Carter has changed the conversation around hospice
• The Seattle Times – President Jimmy Carter and the benefits of early hospice care

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.

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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. 

Ten Years Later, Am I Still Grieving Appropriately?

A personal mediation on the role of hospice care in a daughter’s grief

By Elyssa Katz, NHPCO Marketing and Communications Specialist

December 2013

I sat on the footstool. It was nestled so close to the reclining chair that my knees were pushing into the soft, black leather, forcing a dent. Both of my hands cupped his. I was on his right side and had pulled his left arm over his body to feel both of his hands at once. Every few minutes I would interlace my fingers between his and squeeze my fingertips against the back of his hand, but most of the time, his were just resting in mine. I was perched forward, my back unsupported, my elbows leaning on the armrest. My head was hovering over his. I couldn’t get as close as I wanted. His eyes were three-quarters shut and I couldn’t change that, but they were facing mine, and I know he was looking at me. He wasn’t able to do what he wanted to do, but he was looking at me, and sometimes, he would even have these moments when he could see me. That usually happened after I interlaced my fingers between his.

I smiled the whole time. Not my usual big-toothy-happy smile, but a special one, just for this time, right now. I had never used it before, and I was never going to use it again. I smiled the whole time and he smiled sometimes, when he had those moments of being able to see me, because I had interlaced my fingers between his. He was trying to see me the whole time and smile the whole time that type of smile that I was doing, but he wasn’t able to. I saw when he saw me though, and we smiled. His smile wasn’t his usual because he couldn’t form that one, but the corners of his mouth would turn upwards a bit, and his lips would part just enough for me to tell that they were parted.

I didn’t know what he would have said if he had been able to say anything. He had left me a collection of voice memos so that he didn’t have to say anything after he couldn’t say anything. Since he couldn’t say anything, I thought I should say something. I said that I loved him. I didn’t have anything else to say. I interlaced my fingers between his; he saw me for a moment, and I smiled at him, “I love you.”

I sat on that footstool with my knees all smushed and my body perched forward with my back unsupported and my elbows leaning on the armrest for a really long time. We kept doing all those things until he couldn’t do any of those things anymore, and then I kept doing all those things. Except now I kept my fingers interlaced and I kept my smile steady and I kept repeating the same three words without any pauses. I kept doing that until his hands got colder. His hands got colder and colder and then it got a little harder for me to keep them curled within mine and then I couldn’t keep them curled within mine. His hands lay open, and his hands were really cold. I laid the right side of my head against the left side of his chest. I pressed my ear deeper and deeper into the gray cotton of his shirt as I reached down for the cold, stubborn hands, and then I began to cry.

Leveraging Telehealth to Enhance the Patient and Clinician Experience

The following guest post is adopted from the blog of CareXM, NHPCO Strategic Partner. 

Providing exceptional care to patients while improving the clinician experience can be challenging. Goshen Health, a 3,000-employee Magnet Hospital, proved that through effective experience management, hospice programs can not only survive but even thrive during intensive situations.

Before the emergence of the COVID pandemic, Goshen Health recognized the importance of leveraging technology, restructuring processes, and focusing on its people. This approach successfully saw them through this chaotic period. Their team spearheaded an innovative approach that combined technology, a dedicated triage system, and workforce restructuring to drive positive changes. Here’s a closer look at Goshen Health’s action plan and the results they achieved within the first year:

The Action Plan

People, Processes, and Technology

Goshen Health’s journey to improve the patient and clinician experience began with a holistic approach. They recognized that success would depend on addressing multiple parts of their operations. To achieve this balance, they prioritized three key areas: people, processes, and technology.

• People are at the heart of healthcare. Goshen became dedicated to supporting both patients and clinicians throughout this growth process, leaving no one behind.
• Processes show who you are. Goshen left no stone unturned, dedicating time to transform their administrative processes throughout every part of their healthcare routines.
• Technology transforms quality of care. Goshen elevated their procedures with triage and telehealth which supported, maintained, and engaged the healthcare journey for all.

Restructure Employment

Goshen Health recognized they needed a dedicated workforce committed to their mission of quality care. They undertook a significant restructuring effort and converted part-time employees into salaried full-time equivalents (FTEs). This change created opportunities for staff, but more importantly, it led to clear productivity expectations for everyone. It not only created a stable workforce, but also allowed for greater patient engagement opportunities and accountability efforts overall.

Engage Triage Technology

One of the pivotal steps in Goshen Health’s transformation was their commitment to partnering with a provider offering a care coordination platform with business intelligence for healthcare–CareXM. This collaboration allowed Goshen to streamline after-hours triage and leverage technology to enhance patient care and clinician support. With a robust triage system in place, the hospital staff could focus on proactive case management and improving patient outcomes.

Goshen’s Results

The changes implemented within Goshen Health yielded results within just one year. These outcomes highlighted the success of their strategic approach and the positive impact on both patients and clinicians in many different aspects:

• 70% Reduction in Overtime Expenses: By optimizing their workforce, Goshen Health reduced overtime expenses. The considerate amount of savings allowed the hospital to invest in other areas that needed support. They were able to hire full-time case managers, as well as dedicated evening and weekend staff that ensured around-the-clock patient support.
• Significant Reduction in After-Hours Calls: With a streamlined triage system, Goshen Health experienced a significant decrease in after-hours calls. This allowed for proactive patient management, ensuring that each patient received timely care and support–even over the phone.
• Drastic Reduction in Call Times: Goshen found a clinician-backed and solution-based partner for telehealth services. Shorter call times translated to improved patient satisfaction overall as complaints dwindled.
• Clinician Peace of Mind: The restructuring efforts and improved triage system provided clinicians with the peace of mind needed to tackle the overwhelming number of patients. Best of all, they could “unplug” and disconnect from work, still confident that their patients were receiving quality care during non-office hours.
• Leadership in Employee Engagement: Goshen’s dedication to improving the clinician experience had a profound impact on employee engagement across the board. Their home health and hospice sector set the standard for emotional commitment, inspiring other departments to follow suit and work on behalf of Goshen’s other goals.
• Enhanced Documentation and Virtual Mentoring: Accreditation reviewers noted significant improvements in clinician documentation and virtual mentoring.

With the Right Partnership, Providers Can Overcome Any Outcome

Goshen Health’s journey to enhance the patient and clinician experience serves as an inspiring example of what can be achieved through innovation, commitment, and strategic thinking. By focusing on people, processes, technology, and a triage solution, they achieved remarkable results within a short timeframe. This success story underscores the profound impact that a patient-centered approach can have on both clinician and patient satisfaction, ultimately making healthcare a better experience for everyone involved.

Learn more about the CareXM mission to help partners effortlessly anticipate and respond to patient needs with triage technology backed by our on-demand triage team.

The Carters Are Showing Us What Hospice Means

By Ben Marcantonio, NHPCO COO and Interim CEO 

Former President Jimmy Carter and his family are showing us what it means to live fully and meaningfully at the end of life. For more than nine months, the family has generously shared parts of their experience with us, the American public, and by doing so have painted a new picture of hospice care for millions of Americans.

The photos and videos from the Rosalynn Carter memorial celebrations last week are the latest, and perhaps the most potent, examples of the Carters helping to reframe how people think about the end of life. Many people think of hospice care as giving up, or as something that is only available for a few days. The choice for hospice care has grown consistently to the point where today about half of Medicare beneficiaries select hospice for their end-of-life care. Even so, many still speak the word only in a whisper. Last week, we saw with our own eyes that hospice care can help patients achieve their most important goals even when their time to do so is limited. As New York Times reporters Rick Rojas and Jacey Fortin pointed out “Americans Glimpse Jimmy Carter’s Frailty and His Resolve,” it took incredible personal strength and fortitude, as well as the support of his family, for Jimmy Carter to travel and take part in these celebrations of his wife’s incredible life. It also took hospice care, with a team of hospice workers working with and supporting the family to help the patient – who happens to be a former President of the United States – meet his goals for the time he has left. That is exactly what hospices do, and I could not be more grateful to the Carters for showing it to their fellow Americans in real time.

Throughout last week, news apps, television screens, social media feeds, and newspapers brought us images of the oldest former President in American history celebrating the life of former First Lady Rosalynn Carter, his beloved wife of 77 years. First, at a tribute service in Atlanta – more than 150 miles away from the Carters’ home in Plains, GA – and later at the memorial service in Plains.

In some ways, the images were striking. We saw Jimmy Carter looking thin and pale, in a wheelchair, with a blanket covering his legs. His mouth was sometimes open, and his eyes – which have always been so bright – seemed sunken. We are not accustomed to seeing former US Presidents this way.

Yet in other ways, the images are very familiar, even ordinary. Rosalyn Carter famously said, “There are only four kinds of people in the world – those that have been caregivers, those that are caregivers, those who will be caregivers, and those who will need caregivers.” Many of us have personally witnessed – and often provided care for – family members, friends, or neighbors in times of declining health and frailty at the end of life. We have all been part of commemorations celebrating the life of loved ones after death, and we know how important these moments are. The images we saw of Jimmy Carter this week remind us of our own parents, grandparents, and friends. 

Jimmy Carter entered hospice care in mid-February of this year and has been receiving care at home, as the majority of American hospice patients do. It’s a fitting next chapter for the President whose administration first tested the hospice model as a national program – a test that led to the Medicare Hospice Benefit available to all Americans today.  By publicly sharing the choice for hospice, the Carters sparked a national dialogue surrounding the myths and misconceptions often associated with hospice. Since then, the news about President Carter’s life have helped demonstrate the many benefits of hospice care, which go beyond pain management. In fact, studies show that at any length of stay, hospice benefits patients, family members, and caregivers, including increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress.

In the nearly 300 days since President Carter first elected hospice, the family has continued to share glimpses of the former President’s day-to-day life. We know he has had opportunities to visit and pray with family and friends, and has continued to follow world news, as well as his favorite baseball team, the Atlanta Braves. We know he has enjoyed peanut butter ice cream, one of his favorite treats, and that he and Rosalynn saw Fourth of July fireworks. When President Carter celebrated his 99^th birthday on October 1, we learned that he enjoyed receiving well-wishes from everyday citizens and celebrities alike. We know that Jimmy and Rosalynn spent most of their time together, often sitting in their living room holding hands. Hospice care is designed to support exactly these types of activities and experiences. Hospice care teams work with patients to understand their goals and provide care that enables them to meet those goals to the best of their abilities.

We also know that Rosalynn Carter, a preeminent mental health advocate, was living with dementia. The family made that announcement in May. In mid-November, the family shared the news that Rosalynn Carter had also entered hospice care. She died two days later, at home.

By offering these important details – big and small – the Carters have graciously let the public into their lives. They have sparked untold numbers of conversations across the country about how we each want to live our own lives at the end, about hospice and other care options – what these choices mean, and how they align to our values. In the news, on social media, and at kitchen tables across the country, the Carters’ unfolding story has created opportunities for people to educate themselves and each other, to have courageous conversations with loved ones about their own values and how they would want to live those values if they face serious illness or death, and even to reframe what dying means – it can, and often does, mean ice cream, baseball, fireworks, and quietly holding hands with the people we love.

Adapting Palliative Care to New Models - What's in a Name?

The following guest post is adopted from the blog of Acclivity Health Solutions, NHPCO Strategic Partner. 

Written by: Robin Stawasz, Program Development Executive 

When is palliative care not palliative care? How vital is nomenclature? As the healthcare continuum and payment reform evolves, palliative care providers must re-evaluate what constitutes the essence of palliative care and how the care model can best adapt. Without a federal benefit currently defining palliative care, as it does for hospice, there is great variation in care models which causes many disadvantages. However, it also creates opportunities. Providers can hold on to the core of palliative care while specializing the services to best meet the needs of their stakeholders, including their patients, families, partnered providers, and payers.

The Guiding an Improved Dementia Experience (GUIDE) Model from CMMI is one such opportunity. GUIDE is not technically palliative care. But it calls for many of the core services that palliative care provides. Specifically, it calls for meeting the holistic needs of the patient through an interdisciplinary team, providing education and respite for the caregivers, keeping the loci of care in the home, aiding in transitions, being available 24/7, and addressing social, behavioral, and functional needs through community support. Who better than palliative care providers to deliver such services? Given the payment structure, providers will need to adapt to keep services efficient and sustainable, such as adopting technology and data capabilities to manage this population effectively. But it will create continuity of care for this seriously ill population, as well as build the relevance and networking opportunities for provider organizations. Whether palliative care providers enroll in GUIDE directly or through contracts with other GUIDE providers, there is opportunity here to build service lines, diversify revenue streams, and build costumer pipelines. Being able to apply the strengths of palliative care to new care models, no matter how they are labeled, will empower providers to take advantage of new payment models, especially within value-based care. The palliative care field needs to move into innovation, adaptation, specialization, and collaboration. If not palliative care, other providers will move into this space and the opportunity will be lost.