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. 

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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.

Interpersonal Skills Crucial to Nurse Retention and Cultural Competency

The following guest post from Enclara Pharmacia is adapted from their recent ebook, Cultivating Care: Prioritizing Hospice Nurse Learning and Development, which is available as a free download on the Enclara website. 

Two of the top priorities for hospice providers today are improving nurse retention and advancing health equity. While these are both complicated issues that call for a variety of interventions, there is at least one area where they intersect: interpersonal communication.

Perhaps because nursing is a “caring profession,” we tend to assume interpersonal communication comes naturally to nurses. However, research suggests that nurses are more or less in line with the general public when it comes to overall emotional intelligence, including social skills.

Hospice nurses are well aware that they have room for improvement. In a 2019 survey, 70 percent desired more communication training. Self-perceived deficits in navigating difficult topics with patients and caregivers were associated with stress and burnout, which can in turn increase staff turnover.

Interestingly, two of the communication areas palliative nurses find most difficult are directly related to cultural competency: talking with patients or families from different cultures and responding to spiritual concerns. This suggests that incorporating interpersonal communication training alongside diversity and inclusion initiatives can improve the nurse experience while also reducing disparities in care for minority communities with historically lower hospice participation.

For more insights, download Cultivating Care: Prioritizing Hospice Nurse Learning and Development.

• Explore the benefits of nurse education for both quality of care and staff retention
• Prioritize subject matter in technical, operational, interpersonal and clinical domains
• Leverage resources you may already have available to provide maximum value

Using Data to Manage the Hospice Cap

Janice Mitchell, Communications Specialist at Axxess

Hospice leaders are responsible for the health and well-being of both their patients and their organization. From a financial perspective, this includes minimizing risk by managing spending and the hospice cap.

Defining the Hospice Cap

The cap is designed to ensure that hospice care does not exceed the cost of conventional medical care at the end of life. The allowable amounts are limited by two things: an annual limit per beneficiary and the number of beneficiaries served. Any amount paid to a hospice for its claims that exceeds the cap is considered an overpayment and must be repaid to Medicare.

The fiscal year 2023 hospice cap amount increased by 3.8% from the prior year. The recommendation from the June 2023 MedPAC report is for Congress to update the Medicare base payment rates by the amount specified in current law with a wage adjustment, in addition to reducing the hospice aggregate cap by 20%.

Minimize the Risk of Overpayment

“I was thinking specifically about the Medicare payment and cap rate, and [these are] some of my favorite hospice solution features that I wish I would have had as an operator to minimize my risk – outside of spiral bound notebooks,” said Christina Andrews, Senior Director of Professional Services at Axxess.

Reports on the topics outlined below can help organizations minimize their risk of overpayment:

•  Cap Statistics Report: This type of report calculates allowable Medicare payments, estimates how much revenue is under or over the cap, estimates Medicare beneficiaries and provides the total number of Medicare inpatient days and the maximum inpatient days.
• Median and Average Length of Stay Reports: These reports generate the median and average length of stay for the specified date range. This information helps organizations determine if there is an opportunity to create a balanced length of stay.
• Referral Report: This type of report generates a list of all patients and referrals entered into the system, which also helps balance the length of stay.

How to Balance Length of Stay

Andrews encourages hospice organizations to develop a strategy to balance the average length of stay for their patients. Hospices above the cap admit fewer patients per year and have significantly longer stays and higher discharge rates than hospices below the cap. The following activities can be included in the plan.

• Have daily cap calls to report on daily activity toward goals.
• Assess community needs on an ongoing basis to grow market share and penetration.
• Create a brand and identify key messages to convey based on community needs and how your organization solves them.
• Develop marketing and sales strategies based on referral and admission data.
• Establish weekly admission goals by referral partner.
• Use needs-based selling that highlights the value proposition of the services provided.
• Create a diversification strategy to impact the referral mix and stay within national benchmarks.

Using Business Intelligence

Andrews also recommends the use of business intelligence dashboards to create a road map to success. Useful key performance indicators include:

• Medicare Beneficiaries
• Average Length of Stay
• Media Length of Stay
• Referrals by Referral Partner
• Inpatient Days as a Percentage of Total
• Admissions by Benefit Period
• Admissions by Primary Diagnosis
• Live Discharges by Reason
• Benchmark Against Self
• Benchmark Against National

“Be very cautious of information overload,” Andrews said. “This is the excess of information available to a person aiming to complete a task or make a choice. Managing cap risk is a daily task driven by strategy and the metrics that matter.”

Axxess Hospice, a cloud-based hospice software, includes tools such as intuitive medication management and real-time plan of care updates as outlined above to help keep organizations compliant.

Disclaimer: Axxess is a 2023 Strategic Partner of NHPCO. All views expressed in this blog are the author’s own and do not represent the view of NHPCO.

Life, Liberty, and the Pursuit of Equitable Access to Healthcare for All

 

By Ben Marcantonio

COO and interim CEO of the National Hospice and Palliative Care Organization (NHPCO)

The Fourth of July is a time to celebrate the United States’ independence, but it is also an opportunity to reflect on our nation’s founding principles, and how we can live by those ideals today and into the future. The Declaration of Independence tells us: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” The first sentence of the U.S. Constitution sets out the purpose of that founding document and our purpose as a country: “We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.”

As I think about our work in hospice and palliative care, and the broader healthcare community, I see our purpose reflected in these founding documents. Providers certainly are foundational to quality of life and the pursuit of happiness. By supporting patients, families, and the community, we are helping form a more perfect union. Delivering equitable access to healthcare for all is an important part of justice.

Last week, the news was dominated by headlines about recent Supreme Court decisions on affirmative action and LGBTQ+ rights. Regardless of whether you think the court made the right or wrong decisions in these cases, we can all recognize that these rulings will affect the everyday lives of people, particularly Black and Hispanic individuals, and members of the LGBTQ+ community. We also know that these decisions have an influence that is broader and deeper than meets the eye.

These court decisions have multi-directional impact because they are connected to healthcare. Every day, in communities across America, there are people who have inequitable access to healthcare. It’s clear that access to care is impacted by factors such as wealth, where people live, and what insurance they have or are lacking. It may be less obvious on the surface, but it is no less true that race, ethnicity, language, gender, sexual orientation, and religion can impact access to and/or delivery of care as well. If you can’t get care in a language you understand, is that full access to care? If treatment of pain is likely to vary based on a patient’s race, is our health system equitable? If our Hispanic and Latino neighbors know less about hospice than their Black or White counterparts, as shown in a recent report, can we say we are delivering on the promise of equal access? These issues are often compounded by lack of trust and dedicating the time it takes to build rapport and meaningful relationships. The Hospice through the DEI Lens report shows that nearly 1/3 of LGBTQ+ respondents either doubt or are unsure that hospice care providers would respect their sexuality. With that level of doubt, LGBTQ+ people are less likely to access care. Decades of mistreatment of African American/Black and Native American communities by the medical establishment has led to mistrust of doctors and health facilities, creating significant barriers to access for many Americans today. 

As a longtime hospice provider, and now a champion for hospices across the country, I am proud of the many ways in which our members have been at the forefront of making care accessible to more people. One of the most prominent examples is the way that hospices stepped up during the AIDS crisis to care for patients who were largely ignored by the rest of the health system. Today, we have incredible and inspiring examples of hospices reaching people where they are. There are hospices in prisons, with care provided by prisoners. There are hospices delivering care to people who are unhoused. There are hospices established recently with the express goal of reaching underserved communities, in both rural and urban settings, as well as hospices focused on connecting with African American and Black communities. Let’s take that further. Our charge to support equitable and accessible care for ALL at the end of life, includes caring for those who are on the unpredictable and often precarious trajectory of serious illness and co-morbid conditions.

This imperative and unwavering commitment to equity and justice is foundational to our country and to the hospice movement and should be our guide to creating a better future for all. But equity does not exist in a vacuum. It is found through embracing diversity of thought, words, and actions as well as a curiosity for learning with an open mind. As our nation continues to wrestle with inequities that prevent certain groups of people from pursing life, liberty, and happiness, we can strive for an even more perfect union to become a part of the solution. I believe the hospice and palliative care community has an important role to play. It’s our job to meet people where they are, to provide the care they need at the right time and in the right manner. Our job as healthcare providers is to recognize and celebrate the differences that make each person unique, and to deliver care that meets their individual needs. I’m proud to be part of this community; I’m proud of NHPCO’s work to support hospices in advancing equity and providing inclusive care; I’m proud that the hospice movement is helping advance freedom and justice. As we look to the future of our country and of the hospice movement, we must remain committed to freedom, justice, and equality for all.

Note: NHPCO offers a wealth of hospice and palliative care access and inclusion resources at www.nhpco.org/diversity

Hospice Action Week 2023: Advocates Unite on Capitol Hill

On Wednesday, June 7 hospice and palliative care advocates from across the nation made a difference and presented a united voice in Washington, DC.

As a part of the annual Hospice Action Hill Day, over 70 NHPCO and HAN advocates gathered to make legislative visits on Capitol Hill in support of key policy priorities impacting hospices of all shapes and sizes. This was the first completely in-person Hospice Action Hill Day since 2020. Participants were excited to come together and have face-to-face congressional meetings for the first time in years.

Participants included members of the board of directors for both organizations, state leaders, MyHospice Ambassadors, and grassroots advocates. There were representatives from every piece of the hospice and palliative care system, from CEOs to clinicians and nurses, from administrators to volunteers. NHPCO and HAN staff also joined groups of advocates for meetings, including five NHPCO summer interns. Advocates’ previous experience on the Hill ranged from decades of visits to the Capitol to this event being their first-ever opportunity to meet with legislators.

Over 130 Congressional offices in the House and Senate took time to speak with advocates representing providers, patients, and families from more than half the total states in the US.

Advocates spoke with legislative offices about five key policy issues: community-based palliative care, program integrity, payment policy, the future of the hospice workforce, and the results of the recent NORC study on annual hospice cost savings to Medicare. Through a series of trainings and resources, advocates were introduced to recent developments on these issues and key asks for legislators.

One key ask was for legislators to support the Expanding Access to Palliative Cart Act (S. 1845), which was introduced on June 7 during Hospice Action Hill Day. This bill would authorize the Centers for Medicare & Medicaid Services (CMS) to test a demonstration model of providing palliative care to Medicare beneficiaries outside of the hospice benefit and in community settings. On the workforce front, legislative offices were also asked to support the Palliative Care and Hospice Education and Training Act (PCHETA), which is expected to be reintroduced before the end of June.

On program integrity asks, advocates informed legislative offices of NHPCO and partners’ 34 recommendations to CMS, and that a bipartisan sign-on letter to CMS on the issue from Representatives Earl Blumenauer (OR) and Beth Van Duyne (TX) would soon be circulating.

Advocates have shared that legislative offices were engaged with policy issues and asks, expressing enthusiasm for the latest NORC research, interest in exploring paths forward for workforce and program integrity issues, and in expanding access to palliative care. Offices also reportedly expressed interest in being involved in the We Honor Veterans program.

At the pre-Hill Day training on June 6, Hill staffer Sarah Gilbert of Representative Neal Dunn’s office (R-FL) stopped by for a conversation about what advocates could expect when meeting with a Congressional office. 

The training also included recognition for leaders and advocates who made a special difference in the last year for hospice and palliative care.

The 2022 Hospice Angel Awards for members of Congress were shared. Advocates meeting with some offices the following day were able to personally deliver these awards. Honorees who met with advocates during the Hospice Action Hill Day included Senator Shelley Capito (R-WV) and Congressman Joe Morelle (D-NY).

Winners of the 2022 MyHospice Ambassador Awards were also formally announced at the pre-Hill Day event. MyHospice Ambassadors is an advocacy program for those who are particularly committed to advancing hospice and palliative care through their demonstrated passion, dedication, and leadership. These award winners stood out through their efforts in the previous year:

• Rookie of the Year: Angela LaBarca, Business Development Specialist with Caring Circle Hospice, Michigan
• Impactful Voice: Sandy Kuhlman, Executive Director of Hospice Services of Northwest Kansas, Inc., Kansas
• Ambassador of the Year: Demetress Harrell, CEO of Hospice in the Pines, Texas

The event also briefly recognized Mackenzie Daniek, co-director of Providence Hospice in Seattle and first-time Hospice Action Hill Day attendee. Daniek co-wrote an impactful op-ed on hospice care in the Seattle Times this past April, and organizers wanted to recognize the piece as an ideal example of advocates effectively raising the profile of hospice and palliative care issues.

Overall, the Hospice Action Hill Day and the training that preceded it have already proven to be a seminal moment in NHPCO and HAN advocacy for 2023. With the start of a new Congress and the resolution of outstanding issues like the debt ceiling, it was vital for hospice and palliative care advocates to come together and raise a collective voice for the cause. After years of being separate-but-together, an in-person advocacy event provided opportunities for renewed energy among advocates from across the country.

Learn more about how YOU can be part of changing hospice care policy for the better by signing up with the Hospice Action Network today!

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How Death Doulas Help Those Who Have Decided to Use Medical Aid in Dying

Arlene Radasky | 25-Year Hospice Volunteer and Certified Death Doula/Death Midwife

Disclaimer: All views expressed in this blog are the author’s own and do not represent the view of NHPCO or affiliated organizations.

Virginia grew up on a small farm and was fiercely independent. She worked extremely hard, juggling two jobs to raise her sons after her beloved young husband passed from a heart attack. The youngest of her two sons had an intellectual disability and required much of Virginia’s spare time.

As the boys grew into men, her youngest son, wanting independence for himself, chose to live in a group home. Her eldest son became a dentist and moved across the country.

As Virginia approached 68, she was diagnosed with myositis after several, injury-causing falls. Following two years of treatment, she could not live independently anymore. Additionally, her eldest son had a stroke and was living in a brain injury facility.

Virginia was on Medicaid and was moved to a nursing facility that had a bed available. She eventually declined to the point that she and her doctor decided hospice was the right next step for her wishes. 

She chose a local hospice, was evaluated and accepted, and her care team began caring for her. The hospice death doula volunteer on the team, Mary, made her first visit with Virginia to get to know her. Mary visited once a week for one hour, during which time Virginia became very comfortable with her.

At her visits, Mary helped Virginia fine tune her advance directives, talked about vigils, and planned what Virginia would like to have at hers. Mary also discussed the different options for burials or cremations after Virginia’s death and when Virginia decided on one, Mary made sure it was noted in her advance directives. The hospice team was notified and given copies of the edited advance directives, and Mary made sure a POLST was also completed.

In their many conversations, Mary learned details that Virginia had not felt comfortable talking to the doctor and nurses about. Mary made note of these concerns, such as a suspected bladder infection, in her weekly reports and team meetings. If needed, the subjects were discussed between Mary’s medical team, counselors, and Virginia in more detail.

Virginia continued living in the facility for eight months while she was under hospice care. Her falling risk was high during the last six months of her stay there and she was not let out of bed without supervision. These restrictions cause some toilet accidents that were mortifying to Virginia. Swallowing became more difficult, and the facility tried to compensate by changing her diet, making sure everything was cut into bite-sized pieces and eventually, blending some meals.

At the six month point of Virginia’s hospice care, she began asking about medical aid in dying (MAID). Mary made note of her questions and told Virginia’s team about their conversations. Virginia’s hospice counselor talked to her and together, they made the decision to start the process for Virginia so she would be able to use the option if she wanted to. Virginia asked Mary to transport her and attend the required appointments.

Virginia received the prescription and was told at that time by the facility she was in that she could not be a resident there when she decided to use the option. Virginia became anxious and despondent.

Mary reported this to the hospice team and asked if the hospice facility allowed the option. It did not, and neither did another facility in town. The only option left was to find a bed in a private home.

Mary asked Virginia about her friends with homes who lived nearby. There were very few, but Virginia and Mary contacted one who, after talking to Virginia on the phone, asked to meet with her. Mary picked up her friend, Theresa, and took her to meet with Virginia. They talked for an hour about the past, Virginia’s disease, and her decision. Mary then took Theresa home. One week later, she called Virginia and said she had an extra room where she could come stay for a while.

Mary told the hospice team a bed had been found. Together, Mary and a hospice nurse went to visit Theresa and look at the room. It was found appropriate, and a hospital bed was ordered for Virginia to be able to be in.

Mary was with Virginia during her transport to Theresa’s home and was able to make her comfortable, reporting back to the hospice team that Virginia was laughing with Theresa when she left.

Mary continued her weekly visits with Virginia, who had been on a liquid diet for two weeks when she said she was done and wanted to take the medicine. Mary discussed this decision with Theresa and with her hospice team, and the date Virginia had requested was assigned.

On the day Virginia chose, Mary arrived early so Virginia’s requested vigil space could be set up. A small fountain bubbled in the corner of the room. Virginia was changed into her requested night gown and made comfortable. Large scarves were draped around the windows to create a softer atmosphere, and over Virginia as she lay in the bed. Virginia’s chosen music was playing on Mary’s phone lying next to Virginia. Theresa came in to say goodbye but said she could not stay in the room while Virginia was dying. Mary said she would come tell her when it was over.

The nurse came and helped Virginia mix the medication with her choice of fruit juice. Virginia drank it when it was time. Mary sat next to Virginia, holding her hand at Virginia’s request the entire time.

Virginia continued breathing for longer than expected and the nurse left to attend to other patients while Mary stayed with Virginia during her vigil. After Virginia’s last breath, Mary called the hospice, reported that she needed a nurse to come to declare death, and went to tell Theresa that Virginia had died.

Mary sat with Theresa until Virginia’s body was removed. Mary made one more visit with Theresa a week later to talk about her grief, and to let her know about grief resources in the community.

Mary, the volunteer Death Doula, added many hours of compassionate discussion and attending to personal details for Virginia while she was a hospice patient.