With hospice in headlines for Jimmy Carter and Chief Reynolds, what is it?

June 01, 2023
A woman in nurse's scrubs reaches out to a man in a wheelchair.
There are 1.6 million patients in hospice care, according to the Centers for Disease Control and Prevention's latest statistics. iStock

Hospice care has been in the headlines recently, on the national and local levels. But what does it mean?

Some people, such as former President Jimmy Carter, 98, live for months in hospice. Others, including Charleston Police Chief and cancer patient Luther Reynolds, are there for just a handful of days.

Timothy Kirkendall, director for MUSC Health Hospice at Home by BAYADA, said even some health care experts don’t understand what hospice care involves, whether it’s length of stay or what kind of care people get. So Kirkendall, a nurse with a passion for helping people at the end of life and their loved ones, sat down to explain how hospice works.

First, it’s important to understand that palliative care and hospice care are not the same thing. “When you're in palliative care, you can still seek curative treatment and you do not have to have a diagnosis of six months or less,” Kirkendall said.

That six months or less to live is reserved for people who need hospice care. They’ve run out of treatment options but want to spend their final days, weeks or even months surrounded by loved ones as comfortably as possible.

“It is usually at home. Most people, when they go on hospice, unless their death is imminent, want to be in their home.” But some choose to go to a nursing home, hospital or hospice center.

an elderly Jimmy Carter smiles while at a microphone 
Former president Jimmy Carter in 2015 discussing his cancer diagnosis. The Carter Center/M. Scharz

Jimmy Carter chose to be in the home he and his wife, Rosalynn, built in Plains, Georgia, in 1961. He’s the longest-living president and a Nobel Peace Prize winner. But that didn’t keep him from getting cancer and suffering a series of falls. He stepped back from public life in recent years. A few months ago, he announced he was entering hospice care.

Reynolds battled cancer as well, showing remarkable grit and dedication as he continued to serve as police chief for five years despite a 2021 diagnosis of sarcoma that cost him a leg. He announced he was entering hospice in mid-May and died five days later. Tributes are still pouring in.

What does hospice look like? Kirkendall said if it’s at home, the place is outfitted with hospital beds, wheelchairs and whatever other medical equipment the patient needs. Health care providers such as Kirkendall come into the home to care for the patient. The team includes people with specialized training – not just nurses but also doctors, social workers, spiritual advisers and volunteers.

“It's full time. It's different from, say, home health, where a doctor would give a script to a home health company and say, ‘When you go in here today, you're going to do this wound care, and you're going to take these vitals.’ It’s very specific. Whereas hospice is kind of wide open, and we create the plans of care that best suit that patient.”

The nurse plays a key role in hospice, Kirkendall said, managing a range of symptoms. “It’s not just physically. There are a lot of problems mentally when someone is handling the end of their life. Let's say they've got family members that are estranged. Our chaplains and social workers would try to get people together and make things right.”

a woman walks alongside a man in business attire using walking supports 
Chief Luther Reynolds and his wife, Caroline, at an appointment at MUSC Hollings Cancer Center. Reynolds drew strength from the community, and he in turn inspired those around him. Photo by Clif Rhodes

They try to make the connections the patient needs to feel at peace, whether that involves family, faith, finances or something else.

Medically, part of hospice care involves looking at medications that are no longer needed. “All those medicines can be hard on your body. There's no reason to take cholesterol medicine when you're on hospice. So we start cutting back on medications and say, ‘Let's deal with symptoms only,’” Kirkendall said.

That can make a big difference in patients’ comfort level. They’re getting comfort medication without some of the other drugs that were needed in the past but can be hard on the body.

Hospice caregivers also keep an eye on whether the patient wants to eat and drink and what will make them happy. Carter, for example, has been enjoying ice cream at his home in Plains. 

But Kirkendall said hospice does not involve forcing people to eat. “That's actually one of the ways that we note decline. As your body begins to close down, it's actually not good to just eat and eat and eat. The loss of appetite is one of the ways your body prepares itself. People will be like, ‘Oh my gosh, they haven't eaten in four days.’ That's really distressing. But to a patient who's dying, if they were to eat a sandwich, their body would not be able to handle that. The body knows.”

The hospice team does, however, take care of medical issues that could cause discomfort. “Let's say somebody has cancer. They come on to hospice services, and we find out they have pneumonia, which is not uncommon. Their system is wrecked,” Kirkendall said.

“We'll treat that pneumonia just like somebody going to a doctor's office would. That's symptom management. If they've got large wounds or something like that, we're going to treat those wounds just like you would if they didn't have cancer. Because if they're dying of cancer, that's what should eventually take them.”

Despite hospice’s association with people’s final days, Kirkendall called the work incredibly rewarding. Hospice workers really get to know patients and their families and work with them to make the patient’s end of life as smooth as possible.

It can be hard on those workers because they may feel like they’re losing friends as patients reach the end of life. But Kirkendall said for him, the benefits outweigh the challenges. “I've been in a lot of different types of positions in health care, and a lot of times, you feel like you're showing up, and all you do all day is do what you're ordered to do. Hospice is completely different. You have the opportunity to weigh in in a meaningful way."