Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness that is approaching the end of life. It often includes emotional and spiritual support for both the patient and their loved ones. Still, deciding whether and when to start hospice can be a difficult decision, and it may cause people to feel confused or overwhelmed. Explore answers to frequently asked questions below about hospice care and its potential benefits.

What is hospice care?

NIH/NIA: Hospice care is a service for people with serious illnesses who choose not to get (or continue) treatment to cure or control their illness. People may choose to enroll in hospice care if the treatment is unlikely to be effective or if continuing it has become too burdensome. Hospice aims to provide comfort and peace to help improve quality of life for the person nearing death. It also helps family members cope with their loved one’s illness and can also provide support to the family after the person dies, including help with grieving, sometimes called bereavement care. Medicare reimburses for hospice services when a physician determines that a patient has a life-expectancy of 6 months or less.

Many people with a serious illness use hospice care. A serious illness may be defined as a disease or condition with a high risk of death or one that negatively affects a person’s quality of life or ability to perform daily tasks. It may cause symptoms or have treatments that affect daily life and lead to caregiver stress. Examples of serious illnesses include dementia, cancer, heart failure, and chronic obstructive lung disease.

NHPCO: Hospice focuses on caring, not curing, and in most cases, care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.

What are the benefits of using hospice care?

NIH/NIA: Studies have shown that when a person enrolls in hospice care they are more likely to have increased family satisfaction and better symptom and pain management. They are also less likely to undergo tests or be given medication they don’t need or want.

How does hospice care work?

NHPCO: Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. Support for family caregivers is also assessed throughout the care period. While the range of services provided will vary depending on each individual situation and the specific needs, hospice staff are available by phone 24 hours a day/7 days a week.

Who makes up the hospice team?

NHPCO: The interdisciplinary team usually consists of:

• The patient’s personal physician;
• Hospice physician (or medical director);
• Nurses;
• Hospice aides;
• Social workers;
• Spiritual care providers or other counselors;
• Bereavement professionals;
• Speech, physical, and/or other occupational therapists
• Trained volunteers.

What services are provided?

NHPCO: Among its major responsibilities, the interdisciplinary hospice team:

• Manages the patient’s pain and symptoms;
• Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
• Provides needed drugs, medical supplies, and equipment;
• Coaches the family on how to care for the patient;
• Delivers special services like physical therapy, speech therapy, and even music and art therapy;
• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
• Provides bereavement care and counseling to surviving family and friends.

NIH/NIA: Hospice care can provide a range of different services depending on your symptoms and end of life care wishes. These services include, but are not limited to, emotional and spiritual support for the person and their family, relief of symptoms and pain, help with advance care planning, therapy services, like physical or occupational therapy, and much more.

What role do volunteers play in hospice care?

NHPCO: Hospice provides trained volunteers to aid the family and patients. Most hospice volunteers are trained to relieve the primary caregivers, do household chores, and help bathe the patients. Perhaps the most important task, however, is their ability to be “good listeners.” Volunteers also support the work of the hospice program that might not involve patient or family interaction.

Who qualifies for hospice care?

NHPCO: Hospice care is for any person who has a life-threatening or terminal illness. Most reimbursement sources require a prognosis of six months or less if the illness runs its normal course. All hospices consider the patient and family together as the unit of care.

NIH/NIA: Anyone with a serious illness who doctors think has a short time to live — generally 6 months or less —usually qualifies for hospice care. For Medicare to pay for hospice care, patients must stop medical treatment intended to cure or control their illness.

How is hospice care paid for?

NHPCO: Most people receiving hospice care are covered by the Medicare hospice benefit. This benefit covers virtually all aspects of hospice care with little out-of-pocket expense to the patient or family. As a result, the financial burdens usually associated with caring for a terminally ill patient are virtually nonexistent. In addition, most private health plans and Medicaid in most states and the District of Columbia cover hospice services.

NIH/NIA: Most Medicaid, Medicare, and private insurance providers will cover some of the services provided by hospice. Older adults enrolled in Medicare can receive hospice care if their healthcare provider thinks they have 6 months or less to live. In most cases, they will need to sign a statement choosing hospice care instead of other Medicare-covered treatments for their illness.

When should I start hospice care?

NIH/NIA: Despite the benefits of using hospice care, many people wait to receive hospice care until the final weeks or days of life. It’s important to talk with your doctor about your illness and how your disease is progressing. Starting hospice early may be able to provide months of meaningful care and quality time with loved ones.

Where does hospice care take place?

NHPCO: The majority of hospice patients are cared for in their own homes or the homes of a loved one. “Home” may also be broadly construed to include services provided in nursing homes, assisted living centers, hospitals…wherever the patient considers to be home.

NIH/NIA: Hospice can be provided in many settings — a private home, nursing home, assisted living facility, or in a hospital. Many people choose to receive hospice care at home so their friends and family can visit as they wish. Other considerations may include one’s home environment vs. another setting, cost, and stability of the person’s condition. Choosing where to receive hospice care is a personal decision, but it may be helpful to talk with family members, your caregiver, or your doctor about the level of care you need and if it can be provided at home. The costs for receiving hospice care at different locations may differ.

Does hospice include 24/7 care?

NIH/NIA: While some may think hospice provides 24 hours a day, 7 days a week custodial care, or full-time care at home or an outside facility, this is rarely the case. Although hospice provides a lot of support, most of the day-to-day care of a person dying is provided by family and friends. However, a person from a hospice care team is usually always available by phone 24/7.

Should I include hospice care in my advanced care planning?

NIH/NIA: Yes! Advance care planning involves making decisions ahead of time about the health care you would want to receive at the end of life. Studies have shown that patients who have participated in advanced care planning receive care that is more aligned with their wishes and are more satisfied with their care.

PREPARE For Your Care, funded in part by the National Institute on Aging, is a patient-directed interactive online advanced care program that helps you fill out an advance directive and put your care wishes into writing. This tool is available in English and Spanish.

Do I have to stop other medication if I’m in hospice?

NIH/NIA: When you begin hospice care, medication and other treatments to cure or control your serious illness will stop. For example, if you are receiving chemotherapy that is meant to treat or cure your cancer, that must end before you can enter hospice care. However, a person in hospice can continue to take medications to treat other conditions or symptoms, for example, high blood pressure.

How does hospice benefit people with advanced dementia?

NIH/NIA: Most people with advanced dementia cannot communicate clearly, which means they may not be able to share their concerns with their caregivers. Caregivers may find it difficult to provide adequate care at the end of life because of this and other concerns. Hospice care can help with this situation. Hospice — whether used at home or in a medical facility — can provide caregivers and the person with dementia the support they may need near the end of life. Studies show that family members of people with dementia who received hospice report better quality of care and having more of their needs met at the end of life.