Opinion: Sharing the facts about hospice and end-of-life

Former President Jimmy Carter and his wife former first lady Rosalynn Carter sit together during a reception to celebrate their 75th wedding anniversary July 10, 2021, in Plains, Ga.

Former President Jimmy Carter and his wife former first lady Rosalynn Carter sit together during a reception to celebrate their 75th wedding anniversary July 10, 2021, in Plains, Ga. John Bazemore / AP file


Published: 04-03-2024 7:00 AM

Kris Green, MS, RN, is chief hospice officer, Granite VNA.

There is a lot of discussion currently about end-of-life options that are raising questions about hospice. What is hospice? When is it appropriate, and for whom?

The fundamental goal of hospice is to help patients who are in the late stages of incurable illness and their families experience the best quality of life when curative care is no longer an option. In hospice, the focus shifts to helping patients identify and articulate what they want most in their remaining time and providing symptom management, emotional support and guidance to help them live as fully and comfortably as possible.

Hospice is a specialized form of medical care grounded in the philosophy of ensuring quality of life over quantity of life. Patients on hospice receive individualized care from an interdisciplinary team of professionals, which includes their primary care provider and specially trained clinicians and volunteers. They receive nursing care, providing symptom management and education as well as spiritual care, emotional support and companionship. Hospice is most often provided where patients live, which may be their private residence, an assisted living community, or a skilled nursing facility. Those who need more intensive care may opt for a specialized hospice facility such as Granite VNA Hospice House.

Common misperceptions about hospice include that it is only for patients with incurable cancer and that patients enter hospice just before they die. However, the Hospice Foundation of America defines hospice as, “Medical care for people with an anticipated life expectancy of 6 months or less, when cure isn’t an option, and the focus shifts to symptom management and quality of life.”

People with end-stage kidney disease, heart disease, lung disease, advanced neurological disease, such as Alzheimer’s, and other illnesses may benefit from hospice. And while some patients enter hospice weeks or days before they die, some choose to begin hospice much sooner.

In mid-February 2023, former U.S. President Jimmy Carter famously announced that he would enter hospice “to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.” On February 18, 2024, one year after President Carter entered hospice, his family released a statement saying, “President Carter continues to be at home with his family… and the family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject.” In contrast, Carter’s wife, former First Lady Roslynn Carter, entered hospice only days before she died at the family home in Plains, Georgia in November 2023.

The Carter family’s choices reflect the individual nature of hospice and the way patients on hospice and their families are cared for and supported, which is another vitally important, and oft-overlooked element of hospice — it is also about supporting patients’ loved ones and unpaid caregivers through the end-of-life journey and beyond.

Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. For example, a recent patient at Hospice House continued his efforts to advance a cause that he was passionate about, calling and texting colleagues each day. The support and care he received in hospice also allowed him to focus on spending quality time with family and friends. These are the core goals of hospice care.

We encourage people to learn more about hospice through organizations such as the Hospice Foundation of America, the Home Care, Hospice and Palliative Care Alliance of New Hampshire, and others, and by attending local workshops on end-of-life conversations and planning.

Those who choose hospice care are not giving up hope. Choosing hospice is choosing to live fully, with dignity and respect, in the time that remains. Hospice provides individuals with care and support in a place where one is most comfortable, spending quality time with those they love in peace and comfort.