What Is Hospice Care, Exactly? Plus, How To Know if It’s the Right Time To Consider Hospice

Find out what hospice care involves and what it means for the patient.

It was recently announced that former President Jimmy Carter is entering hospice care. In the statement from the Carter Center, it was said that he would "receive hospice care instead of additional medical intervention." But what does that mean, exactly? What is hospice care, especially if it's in a different category than medical intervention?

As loved ones grow older and approach their final days, it can be difficult to know what is the best approach for caring for them. But it helps to learn more about the options that are available. Parade spoke with hospice nurse and online educator Julie McFadden—known as @hospicenursejulie on TikTok (with 1.2 million followers!) and Instagram.

We'll cover what it means when someone is on (or in) hospice, as well as the different levels of care for hospice patients—and so much more.

What is hospice care?

Hospice is the type of care available to individuals who are nearing the end of their lives. As Cleveland Clinic explains, "Hospice is specialized care you may receive when your prognosis is measured in months instead of years, and comfort is the primary goal."

Who is eligible for hospice care?

According to Medicare requirements, hospice care is approved for individuals who meet all three of these criteria:

  • Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).

  • You accept comfort care (palliative care) instead of care to cure your illness.

  • You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.

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What does it mean when someone is on hospice?

"Contrary to popular belief, hospice is about living, not dying," McFadden explains to Parade. "Yes, if you are being admitted into hospice, that means you will likely be dying—but hospice is there to help you LIVE out the rest of your life [and] manage symptoms so you can be at home and enjoy your life."

What exactly does hospice do?

"Hospice provides a medical team: MD, RN, social worker, home health aide and chaplain—who can visit you weekly in your home to provide medical, emotional and spiritual care," McFadden says.

Mental, emotional and spiritual health are prioritized in hospice care, and the medicine that is provided is more about keeping a patient comfortable to relieve pain and symptoms as best as possible—also known as palliative care.

The support that a hospice care team provides is not only beneficial to the patient, but to their caregivers and loved ones as well—providing them with rest, support, and educated information and experience.

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What are the four levels of care for hospice?

Hospice care can mean different things for different patients because there are actually four levels of care. So, what is hospice care at home vs hospice care in a facility? According to Cleveland Clinic, the different levels include:

Routine home care

The patient is taken care of at home by family or loved ones, with regular visits from hospice care providers.

General inpatient care

The patient resides in a facility where they receive hospice care.

Continuous home care

The patient receives intensive hospice care in their home.

Respite care

To give a patient's caregivers a break, the patient temporarily resides in a hospice care facility.

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Do they feed you in hospice?

It's really up to the patient if they'll be fed in hospice. According to McFadden, "The patient is the boss—if they want to eat, they can eat, and they can eat ANYTHING they want. No more diabetic diets, low-sodium diets, etc. If it's ice cream they want, it's ice cream they get."

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That being said, if the patient does not want to eat, that is OK too. "We never force-feed or coerce someone to eat," McFadden explains. "Tube feeding or IV hydration is never a good idea at the end of life because the body is shutting down and will not process tube feeds or IV fluids as it should. The fluids will third space, cause edema, and possibly back up into the lungs and cause respiratory distress."

Can you be on hospice and survive?

"Yes!" McFadden says. "Many people can come off hospice—these patients are usually patients that have chronic illnesses that are eventually terminal (examples: dementia, congestive heart failure and COPD)."

How long can a person live in hospice?

According to Cleveland Clinic, "Your hospice doctor will assess your condition on an ongoing basis. Hospice care can be extended beyond six months. If your condition improves, your doctor will discharge you from hospice. Your benefits depend on your unique needs."

Related: 101 Buddha Quotes on Love, Life, Happiness and Death

Does hospice mean immediate death?

"It can, and sometimes does, because people tend to come on hospice 'too late,'" McFadden explains. "However, hospice does not mean someone is dying immediately. The criteria is technically less than six months to live, but people can live longer than that on hospice. It all depends on the person and usually the diagnosis."

What to say when someone's dying

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"You know, we don't have to always know what to say to people who are dying," McFadden explains at the beginning of this helpful video. And as she further emphasizes, the truth has the ability to really set both people free—embracing the fact that there is so much that is unknown can actually be liberating.

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How do you know when it's time to go to hospice?

Whether you're the patient or a caregiver for a loved one, it may feel overwhelming to consider hospice—wondering if it's the right next step or not. However, you're not alone! "Usually, your doctor or medical team will let you know your options and if hospice is something that is right for you," McFadden shares. "HOWEVER, I always like to say, 'When in doubt, check it out!' It can't hurt to check out hospice to see if it's a good fit for you. People can only come into hospice if they meet criteria—and hospice company can help you know that. Also, you're never stuck on hospice, you can come off hospice willingly whenever you want to!"

Next, What Happens When You Die? Hospice Workers Share Conversations With Patients as They Near the End of Their Life