Hospice Provides Compassionate End-of-Life Care

Learn about providing pain relief and comfort to patients, following their wishes before they die

Deirdre van Dyk,

AARP

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Published October 14, 2021

/ Updated May 17, 2024

a caregiver holds hands with an older patient, who is lying in bed

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In February 2023, after a series of hospital stays and battles with metastatic melanoma, a skin cancer which had spread to his brain and liver, former President Jimmy Carter entered hospice care. Like his wife, former first lady Rosalynn Carter, who suffered from dementia and died on Nov. 19, 2023, the former president elected to receive home hospice care instead of additional medical intervention. According to the Carter Center, the decision has allowed the former president to spend his remaining time with family at home.

What is hospice care?

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.

“Dying isn’t really the focus of hospice care,” says Angela Novas, chief medical officer for the Hospice Foundation of America. “The focus of hospice is to live well for the remainder of your time, however long that is.”

A multidisciplinary hospice team works together to care for the patient’s medical, psychological and spiritual support. Team members can include the patient’s personal physician, the hospice medical director, nurses and aides along with social workers, clergy and trained volunteers.

Hospice can be provided at the caregiver’s home, a hospital or a hospice facility.

Who pays for hospice?

The full cost of hospice services is covered by Medicare and Medicaid. “If your loved one isn’t on Medicare or Medicaid, private insurance policies generally follow the Medicare model,” says Davis Baird, director of government affairs at the National Association for Home Care & Hospice. There may be a copayment charge for some medicines or in-patient respite care.

Hospice is tied to a certain eligibility requirements. “You have to be certified terminally ill, meaning you have six months or less to live if your terminal illness runs its normal course,” Baird says.

As we’ve seen from Jimmy Carter, in hospice care for over a year, you can continue to receive hospice care after six months, as long as you continue to meet eligibility requirements, Novas says.

What is the difference between palliative care and hospice care?

“Hospice is a type of palliative care, but not all palliative care is hospice,” Baird says.

Patients receiving palliative care have serious or chronic illnesses but can still be undergoing curative treatment for their condition. Under hospice, patients have either decided not to receive more treatment for their life-threatening illness, or there is no more curative treatment to be offered.

Under either system, patients and families will find interdisciplinary teams that work with them to alleviate not only the pain but also the stress of living with a serious or terminal condition. "And both systems excel at symptom relief," Novas says.

Entering hospice doesn’t mean patients can’t get medical care for other, unrelated conditions. For example, says Novas, a hospice patient who has pancreatic cancer won’t receive more cancer treatment, but Medicare will still cover their treatment for glaucoma.

Patients who change their minds and want more curative treatment for their primary illnesses can revoke hospice at any time. “It’s always the patient's choice,” Baird says.

Roles of caregiver, hospice workers

“The role of hospice has always been to supplement the caregiving that is already being done by either family members [or] nursing home staff, if they’re in a nursing home, or paid caregivers. Hospice does not take over that caregiving role. We supplement it,” Novas says.

Hospice use for end-of-life care

More than 1.7 million Medicare beneficiaries used hospice care in 2021, the most recent data available, according to the National Hospice and Palliative Care Organization.

Fifty-three percent were women, and most were over 75. Younger patients who died were less likely to use hospice care. Among Medicare patients who died:

Younger than 65: 25% were in hospice
65 to 74: 36%
75 to 84: 48%
85 or older: 61%

Source: National Hospice and Palliative Care Organization Facts and Figures, 2023

Hospice doctors and nurses oversee medical care and manage pain and other symptoms. They’ll also teach the family how to provide end-of-life care for their loved one. “What that can look like is a nursing aide coming three times a week for about an hour and a half each time on average[and] people get a visit by a registered nurse every week,” Novas says.

Social workers and clergy provide support to both patient and family members to help with the emotional, psychosocial and spiritual aspects of dying. “What’s hard is the family caregiver has been in the mode of taking care of the patient for so long … and keeping that positive hope alive,” says AARP caregiving expert Amy Goyer. “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 will also take charge of ordering equipment. Durable medical equipment such as hospital beds as well as personal care and sanitation items, “that’s all provided and delivered to the door,” Novas says. “It's one less thing that [caregivers] have to do and it's one less thing that takes them away from focusing on the person that they're losing.”

How to find high-quality care

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

Ask for recommendations from doctors, nursing homes, friends, family members and anyone who has knowledge of hospice care.
Look at Care Compare on the Medicare site. Hospices are searchable by zip code, and you can compare ratings of different providers in your area.
Visit hospice facilities or agencies in person to determine how you feel about the people you meet.

Prepare well 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,” Goyer says.

More resources

The Hospice Foundation of America has an "Ask the Expert" feature on its website where its experts answer questions and provide confidential guidance to patients and caregivers. The organization will also connect people to their local hospice organizations.

The National Hospice and Palliative Care Organization has information on planning and preparation for hospice. .

The National Association for Home Care & Hospice and the Center for Medicare Advocacy offer a booklet, "Questions to Ask When Choosing a Hospice Provider," available for download.

Editor’s note: This story has been revised and rewritten with new experts and statistics.

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Deirdre van Dyk is an AARP associate editor covering Social Security, caregiving, technology and fraud. She previously worked at USA Today and Time, where she covered business, government, sustainability and innovation.