On December 29, 2024, President Jimmy Carter died at 100 years old. His stay in hospice, which lasted nearly two years, garnered media coverage and created a national conversation about end-of-life care. In Compassion & Choices’ Summer 2024 magazine, we share President Carter’s story, our dedication to federal policy addressing end-of-life care and the benefits of hospice to everyday people

In 2023, the Carter family shared that former President Jimmy Carter and former First Lady Rosalynn Carter were both, though at different times, entering hospice care in their Georgia home. After receiving treatment for cancer, the Carters shared in a February 2023 statement that President Carter, a Nobel Peace Prize recipient, “decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.” At this writing, he has been receiving hospice services for over a year. In November 2023, Rosalynn Carter entered hospice with a dementia diagnosis. She died a few days later.

The Carters’ willingness to share their experience with hospice introduced millions to the program. Hospice, a program providing care and services for patients and their families at the end of life, is often misunderstood and considered, if considered at all, the very last step for care in the dying process. In reality, hospice is a wonderful resource for patients and their families as they progress in the dying process. Many people who engage the service wish they had set it up earlier, as soon as they were eligible. 

What is hospice?

Hospice is a specialized type of care that focuses on compassion, quality of life and care during the final months of life. The goal is maintaining or improving the quality of life while managing symptoms for someone whose illness, disease or condition is unlikely to be cured. Each patient’s individualized care plan is designed to address the physical, emotional and spiritual pain that often accompanies terminal illness. Hospice care offers support for families and caregivers during the illness and grief support after the death.

Hospice uses an interdisciplinary team-based approach to providing comfort care. The care team includes a hospice physician, hospice nurses, social worker, certified home health aides, spiritual support counselor(s), family support volunteers and grief counselors. Care be provided in the home or in residential care facilities such as assisted living, memory care or in the case of the Carters, at home. Hospice offers supportive care to benefit the patient and caregivers as the disease progresses and ultimately helps the patient prepare for the end of life. 

Who pays for hospice?

For most people, hospice is covered by Medicare Part A, Medicaid and most private insurance plans.If the patient has Medicare and meets hospice eligibility requirements, then typically 100% of the cost of hospice care is paid for with no deductible or copayment. Medicare pays hospice providers for each day a patient is enrolled in the hospice benefit. The daily rate varies according to duration of the stay and where the care takes place (residential or in-patient).

Why don’t more people enroll in hospice?

Hospice is sometimes misunderstood as “giving up” on life. Likely, the culture of “fight language” regarding terminal illness has contributed to this myth. Phrases like she needs to “beat this disease” or he “lost his battle with cancer” create an expectation that to die is to fail and that terminal diagnoses are “winnable.” Death is not the result of a lack of fighting or the desire to live. 

“We’ve been conditioned to think one way when it comes to healthcare. And unfortunately, many patients and their families miss the opportunity to engage in the whole aspect of healthcare, the full aspect of healthcare. Hospice is an opportunity to shift the lens altogether and focus on the fact that you make the decisions that work for you. You are developing your own roadmap. It’s not a scavenger hunt. It’s really setting forth all of the aspects of your life that are important. This is advocacy at its best.” – Dr. Sonja Richmond, national medical director, Compassion & Choices

Compassion & Choices federal work

Through our federal advocacy and policy work, Compassion & Choices works to improve and expand end-of-life care through systemic and policy change. Hospice is an excellent resource, but access is limited. Compassion & Choices is exploring potential improvements to update hospice care through federal law and regulation to include two components: 1) concurrent care and 2) expanding the six-month prognosis eligibility requirement.

Many people would benefit from some period of time where they’re still receiving what are considered “curative treatments” while also receiving hospice services. The patient is considered to be in a terminal phase but this phase can extend way beyond six

months. One example is end-stage renal disease. Dialysis can be life-extending and is considered “aggressive” treatment. Many people would benefit from a period of time to develop relationships and build trust with an end-of-life care team before they choose to stop dialysis to receive hospice benefits.

This trust-building phase is particularly important for people who have been denied care due to discrimination and face inequities in the healthcare system. To immediately jump from receiving all aggressive or curative treatments to completely stopping may feel abrupt to people who have not had easy access to healthcare throughout their lives. It does not help create trust in the system. Concurrent care gives a period of time where some curative treatment might continue under the care of hospice.

Requiring patients to have a life expectancy of six months to be eligible for hospice doesn’t allow for paths of many diseases like Alzheimers and renal disease where patients would benefit from a longer period of time. For people who have a disease with a long terminal phase, it would be more beneficial for patient care, effectiveness of care and costs to increase the length of eligibility from six months to a longer period.

Get Started With Hospice Care

A hospice referral

Discuss your interest in hospice care with your healthcare team. You can also initiate hospice services without a physician referral.

Finding and selecting a hospice

Choose a hospice that aligns with your priorities and beliefs and will honor your end-of-life care preferences. Some hospices will support you in the full range of end-of-life options while others may have limitations.

Here are a few tips:

» Ask friends or family who have had experiences with hospices in your community for a recommendation.

» Ask your healthcare team if they prefer a particular hospice and why.

» Ask your insurance company. They may only pay for a particular hospice.

» Ask hospices you are considering whether they take your insurance.

Connecting with care

Once you’ve found a hospice, you may want to call and ask to speak to an intake person or a nurse. Take notes. Explain your current medical situation, tell them where you live and ask questions that are important to you like those listed here. Listen for concern, kindness and thoughtful responses. 

Ask questions like:

» How will the hospice staff work with me and my loved ones and honor my wishes?

» How are family caregivers provided the information and training they need to care for me at home?

» How does respite care work?

» Are loved ones told what to expect in the dying process?

» What happens after I die?

» If I decide to voluntarily stop eating and drinking as I near death, will hospice support me and my family in that process?

» How will my pain be managed? If I am in pain, will I immediately receive support to relieve it?

» If my pain cannot be managed, will hospice provide palliative sedation to keep me unconscious and comfortable until I die?

» If I live in an authorized state for medical aid in dying, will hospice support me and my family in that process?

» What will happen if care cannot be managed at home?

» What bereavement services are available for my family after I die?

» Are all of the costs of hospice care covered by my health insurance?

» What services will we have to pay for out of pocket? Are any services provided at no charge?

For more information, contact the National Hospice and Palliative Care Organization

(NHPCO), which represents most hospice programs in the United States, at 800.658.8898 or visit nhpco.org/find-a-care-provider. Remember, YOU ARE IN CHARGE.

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