Former President Jimmy Carter Enters Hospice Care: What That Means

“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.

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 Medicare.gov. 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.

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