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Former First Lady Rosalynn Carter Enters Home Hospice Care: What That Means

Learn about ‘fighting the fight’ for patients’ comfort, following their wishes before they die

spinner image Close up of a hospice nurse holding the hands of one of her patients
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The Carter Center announced Nov. 17 that former First Lady Rosalynn Carter, 96, has entered home hospice care six months after her dementia diagnosis. She joins husband Jimmy Carter, 99, the oldest living president, who has been on hospice care since Feb. 18, following multiple occurrences of cancer, including melanoma, liver and brain cancer.

“Former First Lady Rosalynn Carter has entered hospice care at home. She and President Carter are spending time with each other and their family,” according to the statement.

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So, what exactly is hospice care?

Think of hospice as a philosophy of compassionate care for a loved one at the end of life. Hospice also offers a needed break and counseling for the family, in particular for a family caregiver. It differs from palliative care, which provides medical care for people with serious illnesses and focuses on symptom and stress.

Though the word “hospice” might trigger the notion of giving up on life, the goal is to give a person the best possible quality of life — emotional, physical and spiritual comfort. And studies have shown that patients who chose hospice care lived almost a month longer than similar patients who did not choose hospice.

“Hospice is an interdisciplinary model of care. It’s holistic, person-centered and aligned with individual needs,” says Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization in Alexandria, Virginia.

Medicare and Medicaid typically cover the full cost of hospice services, and private insurance policies generally follow the Medicare model, says Theresa Forster, vice president for hospice policy for the National Association for Home Care & Hospice in Washington, D.C. Medicare pays for about 85 percent of U.S. hospice care.

“Regarding Medicare or Medicaid, virtually anything that the patient needs for terminal illness which is determined to be appropriate is going to be free of charge,” Forster says. “Once you go into hospice under your plan of care, you will receive it.”

Hospice on rise for
end-of-life care

More than 1.5 million Medicare beneficiaries used hospice care in 2018, the most recent data available, a 4 percent increase from the previous year. Fifty-five percent were women, and more than 3 in 5 were 75 or older.

• Younger than 65: 16.3%
• 65 to 74:
• 75 to 84.
• 85 or older:

Source: National Hospice and Palliative Care Organization

Who is a hospice candidate?

A doctor must certify that a patient meets both of these requirements:

1. A fatal medical condition for which the patient is not seeking curative treatment

2. An expected prognosis of six months or less

That may change soon.

“You shouldn’t give up curative treatment in order to get hospice care, and that’s being tested right now through a demonstration from Centers for Medicare & Medicaid Services,” Banach says. “In the future we will be in a better place with fewer limitations on hospice.”

The number of racial and ethnic minorities who receive hospice care has been increasing, especially Hispanics and Asian American/Pacific Islanders. But in 2018, the most recent year for which data is available, more than 4 in 5 hospice patients were white.

Talk far in advance

Ahead of time, perhaps even years before a decision is necessary, talk with family members about their wishes for the end of their lives. Put it all in writing, perhaps in such legal documents as an advance directive, advance care planning or a living will.

“It is a huge comfort for a family caregiver to know what a loved one would want,” says Amy Goyer, AARP family and caregiving expert.

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Most hospice care is provided at the loved one’s home, whether that is a private residence, an assisted living facility or a nursing home. Hospice also could be provided at the caregiver’s home, a hospital or a freestanding hospice facility.

Members of a multidisciplinary hospice team work together to develop a care plan that centers on a patient’s medical, psychological and spiritual support. The team members can include these professionals:

  • The patient’s personal physician
  • A hospice physician or medical director
  • Clergy or other spiritual counselors
  • Hospice aides
  • Occupational, physical or speech therapists
  • Nurses
  • Social workers
  • Trained volunteers

Roles of caregiver, hospice workers

Typically, a family member serves as the primary caregiver and helps make decisions for the loved one when appropriate. The caregiver is engaged during a loved one’s battle against disease and later during hospice.

“What’s hard for the family caregiver is that the person has been in the mode of taking care of the patient for so long, of searching out and researching the options, and finding the best treatments and keeping that positive hope alive,” Goyer says. “Now you are flipping and not fighting that fight anymore, but you are focusing instead in fighting the fight for their comfort and following their wishes.”

Hospice workers do help in that fight with these kinds of services:

• Assisting the patient and family members with the emotional, psychosocial and spiritual aspects of dying

• Having a hospice doctor make house calls or driving the patient to doctors’ appointments

• Helping with bathing and dressing, chores, food preparation and laundry

• Instructing family on how to care for the loved one

• Managing pain and other symptoms

• Providing general companionship, which can give a family caregiver time to run quick errands or do other work around the house

Also, when your loved one dies, hospice workers can provide counseling for surviving family and friends.

How to find high-quality care

A caregiver should research hospice agencies and identify the top choice or choices well before this care is needed, experts say.

“It’s a much better idea to do diligent homework and make some decisions while things are calm,” Banach says.

• Ask for recommendations from doctors, nursing homes, family members and anyone who has knowledge of hospice care.

• Look for accreditation through the Accreditation Commission for Health Care, the Community Health Accreditation Partner (CHAP) program or the Joint Commission on Accreditation of Healthcare Organizations.

• Visit Hospice Compare on All firms listed qualified for Medicare certification by providing 15 core services.

• Visit hospice facilities or agencies in person to determine how you feel about the people you meet.

Questions for hospice providers

Here are a few important questions to ask when you are visiting with an accredited agency you are considering for providing hospice care for your loved one.

• Are staff nurses and doctors available 24 hours a day? You’ll want that emergency staffing, especially as your loved one enters the final few days of life.

• Is your medical director board certified? This is not a requirement, but the extra step of certification is another assurance of experience and training.

• How many years has the organization been in operation? Many U.S. hospice programs trace their beginnings to the 1980s AIDS epidemic, and Congress made hospice a permanent Medicare benefit in 1985.

• How many patients does the hospice care for? Smaller hospices may provide more personalized care, but those serving at least 100 patients have more resources.

• What is the typical caseload for your hospice nurses or nurse practitioners? Ideally, nurses should manage no more than 12 patients at a time, especially if they travel. They do not see all patients daily.

• Can you meet our needs for a care plan? Have an idea of what you and your loved one want and whether that is within the scope of the hospice’s care.

• What is expected in terms of help from the family? This is especially important if much of the previous caregiving has been long distance.

• What are the options for inpatient care? Sometimes staying in a hospice facility is temporary and can be used to stabilize patients until they can return home.

Editor's note: This article, originally published in 2015, has been updated to reflect new information.

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