President Carter is on hospice care, but what is it? Our medical analyst explains

By Katia Hetter, CNN

On Saturday, the Carter Center announced that former US President Jimmy Carter will be receiving hospice care at his home in Georgia.

“After a series of short hospital stays, former US President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention,” according to the statement. “He has the full support of his family and his medical team.”

The 98-year-old Carter is the oldest living US president in history. He has survived metastatic brain cancer and faced a number of health scares, including brain surgery following a fall in 2019.

As Carter opted for hospice care, CNN Medical Analyst Dr. Leana Wen and I thought that many people might be unfamiliar with hospice care beyond a vague understanding that some people receive it toward the end of life. There can be benefits and blessings for the person receiving the care and their loved ones, but there are also some common misconceptions about what it involves.

I asked Dr. Wen, an emergency physician and professor of health policy and management at the George Washington University Milken Institute School of Public Health, to guide us through some questions.

CNN: What is hospice care and who qualifies for it?

Dr. Leana Wen: Hospice care is a type of specialty medical care for people near the end of their lives that focuses on maximizing comfort for the patient and support for the patient and their family. That includes reducing physical pain and tending to the psychological, emotional and spiritual needs of the patient and the family.

Generally, to qualify for hospice care, the patient must have an incurable medical condition with an anticipated life expectancy of less than six months. The types of medical conditions that patients have include end-stage cancer, advanced dementia, heart failure and chronic obstructive pulmonary disease.

CNN: Where do patients receive hospice care and who provides it?

Wen: Hospice care is an approach to medical care, not a specific place, so it can be provided in a number of different settings. The choice of settings is up to the patient and family. Providers are an interdisciplinary team of physicians, nurses, home health aides, pharmacists and others who will tend to the patient no matter what setting they choose.

Many patients opt to receive hospice care in their homes, where they can be in familiar surroundings. The hospice team helps to provide equipment, supplies and staff to assist the family to care for their loved one. They provide regular home visits and are generally available around the clock for concerns as they come up.

Hospice can also be delivered in a nursing home or at the hospital. In addition, there are specialized hospice centers.

CNN: What are some common misconceptions of hospice care?

Wen: There is a misconception that hospice care is “giving up” on medical care. Actually, hospice care is a specific type of compassionate medical care for patients in the last stages of incurable disease to live as fully and comfortably as they can. A primary aim of hospice care is to manage the patient’s symptoms so that the patient’s last days can be spent with their loved ones, with dignity and the highest quality possible.

A second misconception is that once a patient enters hospice care, they can no longer receive any medical treatment. This is not true. Patients receive medicines to help their symptoms and alleviate their pain. They and their families can also choose to leave hospice at any point and resume, say, active treatment for their cancer.

I’ve also heard people say that hospice care is only for people with a few days to live. This is also not the case. Often, patients don’t begin hospice care soon enough to take full advantage of the help it offers. Beginning it earlier may help provide months — rather than days — of quality time with loved ones.

CNN: What are the benefits and blessings of this type of care?

Wen: In modern medicine, the tendency is to approach diseases as something to be cured. Unfortunately, this is not always possible. The patient may choose not to continue certain treatments that cause severe pain when there is slim chance for a cure. When there is limited time left to live, that patient may wish to minimize suffering and to prioritize spending the remaining time with their loved ones.

I know the benefits and blessings of hospice care firsthand. My mother was diagnosed with metastatic breast cancer in her 40s. She fought her cancer valiantly, undergoing multiple rounds of surgery, radiation and chemotherapy for eight years. Unfortunately, she had multiple recurrences.

During the final recurrence, it became clear that a cure was not possible and that she had limited time — as it turns out, weeks — to live. She opted to enter hospice care, with the aim to spend her final days at home, rather than in the hospital, and with the aim of alleviating her pain and suffering rather going through yet another round of chemotherapy. I understood and supported her decision, and it was important to me and my family to give her what she wanted, which was the highest quality of life with the least amount of suffering.

CNN: Does insurance cover hospice care?

Wen: Most hospice patients are eligible for Medicare, which provides for hospice care through Medicare Hospital Benefit. Medicaid also pays for hospice care in many states, and many private insurers will cover it. For patients who don’t have insurance, there are some community programs that offer sliding scale coverage or free care.

CNN: What’s the difference between hospice and palliative care?

Wen: There are physicians, nurses and other medical professionals who specialize in hospice and palliative medicine; these are very much complementary and related fields of medicine that share a similar philosophy.

Palliative care, like hospice care, also prioritizes easing suffering, improving the quality for the patient, and delivering that care in a way that centers the patient and family. But differently from hospice care, the patient doesn’t have to forgo curative treatment — palliative care can be provided together with curative treatment. Over time, if it becomes apparent that the patient is likely to die within six months, palliative care can transition over to hospice care.

Both hospice and palliative care are important specialty medical services that are underutilized, and can offer much support and comfort to many more patients and families.

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Correction: An earlier version of this story incorrectly referred to Dr. Leana Wen’s mother’s cancer recurrences as remissions.