Celebrating Jimmy Carter: A Century of Life and a Legacy of Courageous Conversations

As the world celebrates former President Jimmy Carter’s 100th birthday on October 1, we reflect on the remarkable impact he has made and continues to make on our country, even through the last phase of his life.

President Carter lives a life of service above self. As a young man, he had a distinguished career as a Naval officer before serving as Governor of Georgia and later, as President of the United States. After his time in office, through the Carter Center, President Carter and Former First Lady Rosalynn Carter led incredible efforts to increase peace and improve health around the world. In this last chapter of his life, his commitment remains steadfast. In February of 2023, President Carter made the courageous decision to publicly share his choice for hospice care. In doing so, President Carter sparked a national conversation about the value of hospice care, one that is reinvigorated even today as we celebrate the momentous milestone of 100 years of life.

To honor the longest living former president’s experience, we have compiled some important articles from the last two years that highlight how his choices now are helping Americans better understand hospice care.

• CBS Evening News – Spotlight on home hospice care as Jimmy Carter turns 100

• The Atlanta Journal Constitution – Former President Carter’s health journey has raised awareness of hospice care

• Axios – Carter's year in hospice sheds light on end-of-life care option

• The New York Times – Jimmy Carter’s Long Goodbye

• The Atlanta Journal Constitution – Jimmy Carter, one year after entering home hospice, remains resilient

• 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 Washington Post – Carters’ journey highlights tough questions about when to choose hospice

• NPR Morning Edition – What does it mean to offer compassionate care for people facing the end of life?

• The Hill – How Jimmy Carter has changed the conversation around hospice

• The Seattle Times – President Jimmy Carter and the benefits of early hospice care

Today, we celebrate former President Jimmy Carter for his meaningful contributions to our country, including his continued commitment to serving his nation even now. Carter and his family have opened the door for many Americans to have important conversations about their own end-of-life wishes.

Happy 100^th birthday, President Carter. We wish you the best in this new century.

Navigating the Future of Advance Care Planning: A Strategic Imperative for Hospice and Palliative Care Leaders

The following content is a guest blog authored by Maria D. Moen, SVP of Innovation & External Affairs at MyDirectives, an NHPCO Strategic partner. 

In a world where we crave and even expect a level of control over every aspect of our lives, it's only natural that this desire includes our healthcare decisions. People want to have a say in their medical journey, not be moved through the healthcare system as a voiceless traveler. Advance care planning (ACP) is an essential process in enabling a person to capture and record their treatment preferences, which can then be used as a guide for healthcare providers, caregivers, family members, and loved ones when it becomes necessary. 

Rebecca Sudore, MD, a respected researcher and leader in advance care planning, succinctly defines ACP as "a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care." Seems simple enough and a concept that we can all get behind.

Building and Maintaining Trust in the Patient-Provider Relationship

In hospice and palliative care, trust is the cornerstone of the patient-provider relationship. To maintain and strengthen this trust, it's essential that patients' wishes are not only documented and kept updated, but also readily accessible to others who would treat them during a health crisis or emergency. This requires a seamless availability of ACP documents across the broader care continuum. This kind of access and approach works to build patient trust in their healthcare providers, by instilling confidence that their healthcare providers will respect and honor their wishes.

Leveraging Technology to Streamline Care and Enhance Patient Outcomes

Healthcare is loaded with clinician burden due to repetitive, time-consuming tasks that can interfere with delivering personalized care. By embracing technology throughout the ACP process, providers can automate many time-consuming processes, allowing them to focus on what truly matters to patients: delivering compassionate, personalized care.

A well-structured ACP process should include:

• Comprehensive Documentation – At the time of intake or admission, inquire whether the patient has existing ACP documents. If they do, be sure to collect them and review them carefully with the patient and/or their healthcare agent to ensure they align with the patient’s current values and goals of care. It’s crucial to keep these documents current, reflecting any changes in the patient's wishes or preferences for the care they want to receive.
• Accurate Record Keeping – The patient’s chart or electronic health record should include copies of their ACP documents with key elements highlighted in the record that can become time-sensitive such as CPR status, designated healthcare agents and their contact information, and any specific treatment preferences.
• Visibility Across the Care Team – It’s essential that this information be easily accessible to every member of the care team. Digital systems are particularly effective at providing quick reference points, as well as more detailed information, when it is urgently needed.
• Broad Access and Sharing – Solidify the trust patients have placed in your team by ensuring that their ACP documents are available not only to the immediate care team but also to others those patients will encounter during their healthcare journey. This might be family members and friends but should also include other healthcare providers across the care continuum. Go beyond your own specific care location to ensure ACP forms can be easily found by medical teams. This may include uploading documents to state health information exchanges, their patient portal, or any other secure digital platforms, such as personal health record systems or large-scale registries of ACP documents.

The Imperative of Digital Advance Care Planning

Given the complexity of today’s healthcare and the mounting pressures to maximize reimbursement, quality, and outcomes all while minimizing risk, the shift to digital ACP document creation and access is not just a convenience — it’s a necessity. Here’s why digital ACP systems are especially critical for hospice and palliative care providers:

• Portability and Accessibility – Digital ACP documents can seamlessly follow the patient across different care settings, ensuring their wishes are respected no matter where they receive care. This eliminates the risks associated with paper forms, which can be misplaced or inaccessible in a crisis, and tangibly demonstrates commitment to the patient even when they are being treated by other medical teams.
• Verification and Authentication – Digital systems provide a clear audit trail that reduces risk by verifying who created the document, when it was signed, which version is current, and who has accessed it. This enhances the authenticity and reliability of the documents and increases the confidence of the provider using them to inform treatment.
• Interoperability and Integration – Digital ACP documents can be securely yet easily made available across different providers, healthcare systems, health information networks, and with trusted individuals, ensuring that everyone connected is working from the most current information. This is particularly important in complex care environments where multiple providers may be involved in a patient’s care.

Creating a Personalized Healthcare Experience

Hospice and palliative providers must deliver care that is not only clinically sound but also deeply personalized. Modernizing advance care planning through digital solutions to honor the patient voice as part of a larger ecosystem of care is a crucial step in achieving this goal. By ensuring that every patient’s healthcare journey is guided by their values, preferences, and goals of care, providers can create a more compassionate, patient-centered care journey that fulfills the expectations of both patients and partners in care.

Shaping the Future of Care

Embracing digital ACP document options reflects a foundational shift towards patient-centered care, where individuals are empowered to shape their healthcare journey. For hospice and palliative care providers, it’s not just about keeping pace with technology; it’s about ensuring that every patient’s voice is heard and respected, especially in their most vulnerable moments. By integrating these modernized approaches to personalized care into your organization, you can build stronger patient and family member relationships, improve the outcomes of the care your patients receive, and fulfill your commitment to providing the highest standard of compassionate care to those you serve.

 

About the Author

Maria D. Moen is the Senior Vice President of Innovation & External Affairs at MyDirectives and a seasoned advocate for leveraging technology to enhance patient outcomes and streamline healthcare operations.

About MyDirectives®

MyDirectives is the premier provider of digital advance care planning (ACP) solutions and the only national registry and repository for highly secure, cloud-based storage for anytime, anywhere access across the healthcare continuum.

Hospice Helpers: Volunteer Recruitment and Engagement Tips

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

With the hospice volunteer requirement of five percent returning in January of 2024, now is a great time for hospice professionals to put on their volunteer recruiter hats.

Many hospices have found it challenging to keep volunteers engaged post-pandemic. National averages show that hospices lost between 30 to 50 percent of the volunteers they had before COVID-19 hit. Some hospices adapted by offering virtual volunteer opportunities, while others asked volunteers to perform hands-off duties such as writing notes or making items for patients from home. Now, many hospices need to do extra work to not only gain new volunteers, but to regain previous volunteers whose support slowed during the pandemic.

This blog walks hospice professionals through recruiting and retaining hospice volunteers, from hanging flyers to volunteer skill-building.

Targeting Potential Volunteers

Hospice volunteers span all ages, but one-third of hospice volunteers are between 41 and 64 years of age. Hospice providers have a significant opportunity in recruiting volunteers of younger generations to join their teams.

Below are 12 viable strategies for recruiting the next generation of volunteers:

1. Ask young volunteers to recruit their friends and celebrate those volunteers who bring in others with special recognition.
2. Offer a variety of schedules and volunteer options to accommodate the often-busy lives of young people.
3. Reach out to leaders of local church youth groups, school clubs, and sports teams to generate interest.
4. Meet the audience where they are—on social media. Keep an active profile(s), highlighting volunteer successes and advantages to generate interest. Ask volunteers to repost your content.
5. Make it a mutually beneficial experience for volunteers by offering position titles, letters of recommendation, and development opportunities.
6. Focus on the cause AND what’s in it for volunteers. Gen Z, in particular, is a passionate generation and will likely respond to calls of helping others. However, it’s still important to remind volunteers how service can benefit them—such as resume building, career education, and meeting new people.
7. Things move fast in today’s world. Return prospective volunteer calls and emails within 24 hours so you don’t lose them to another organization.
8. 60 percent of volunteers are moved to volunteer because of personal experiences. When marketing your volunteer opportunities, try to highlight the personal connections and rewards.
9. Participate in job fairs.
10. Hang flyers with QR codes at youth-centered community organizations and high schools.
11. Present to nursing, social work, and other healthcare-related classes at nearby colleges and universities, as well as local youth groups and organizations.
12. List your volunteer opportunities on volunteermatch.com.

Screening Volunteers

Once you get interested volunteers and begin screening, consider the following about them:

• Relevant skills
• Degree of sensitivity
• Level of comfort with the topics of death, dying, and loss
• Willingness to complete required training
• Time available
• Ability to adjust to significant losses

Background Checks

Once you’re ready to bring someone on board, don’t forget that they are unpaid employees and will need a background check. Criminal background checks must be obtained for volunteers in accordance with state requirements. In the absence of state requirements, criminal background checks must be obtained within three months of the date of hire for all states that the prospective volunteer has lived or worked in over the past three years. In addition to a criminal background check, it’s a good idea to have your own system of checks and balances, including:

• Ensure volunteers who drive as part of their volunteer description have an acceptable driving record and adequate auto insurance coverage (review your state limits and follow internal policies).
• Complete repeat background checks as per state guidelines. Adhere to a follow-up background check schedule. Some checks may need to be repeated after a certain number of years.
• Create volunteer position “profiles” to map the skills needed for each position, as well as the risks each pose, to inform training needs.
• Ensure volunteers are properly supervised, when appropriate.
• Revisit the onboarding process from time-to-time to make sure you’re keeping up with best practices.

Nine Ways to Retain Volunteers

In addition to documenting your recruitment strategy, hospices should review and maintain a volunteer retention strategy.

Here are nine tips to keep your volunteers interested and engaged:

1. Offer continual and flexible training and growth opportunities through additional responsibilities, where applicable.
2. Appoint volunteer leaders and trainers.
3. Encourage volunteers to keep sharing new skills with patients, such as writing poetry, learning an instrument, or reading a book.
4. Show your volunteers some appreciation by sharing the value they bring patients and their loves ones.
5. Emphasize the personal and professional growth volunteers often undergo.
6. Remind volunteers that they’re needed. Being needed is a human instinct and something that makes everyone feel good.
7. Ensure volunteers feel supported—personally and professionally—by checking on them if they suffer a patient loss and throughout the year.
8. Encourage volunteers to take ownership of their work, such as offering new ideas for patient engagement activities.
9. Highlight volunteers and their work in local newspapers or on local tv news, encouraging them to continue and inspiring new volunteers through storytelling.

Volunteer Accident Coverage

It’s important to think about the risks associated with having volunteers serve your patients and their loved ones. Having insurance coverage, like Glatfelter’s Volunteer Accident coverage, can help cover providers in the event of volunteer accidents or injuries. Volunteer accident coverage also covers unexpected and unreimbursed medical expenses that occur from an accident while volunteering and provides a lump sum benefit when a volunteer suffers a serious injury.

Hospice began as a community initiative and remains a community initiative. Through smart recruiting and retention, hospices can keep their volunteers’ attention, ensuring they’ll have, and help create, life-changing memories for years to come.

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.