Where Is Hospice Care Provided and How Is It Paid For?

No matter where it is given, hospice care is meant to be available 24 hours a day, 7 days a week. Your doctor, hospital social worker, case manager, or discharge planner can help you decide which type of hospice program is best for you and your loved ones.

Who provides hospice care?

Hospice care is given by a hospice program or provider. The hospice program’s team of professionals will work with the primary caregiver (usually a family member) to provide care and support 24 hours a day, 7 days a week.

The primary caregiver

Every person who gets hospice care must have a primary caregiver. This is often a family member or close friend. This caregiver will work with the hospice team and person with cancer to develop a care plan based on the person with cancer’s specific needs and preferences. The primary caregiver will help make decisions with or for the person getting hospice care.

For people getting home hospice care in their home, the primary caregiver not only provides most of the physical care for the patient, but helps keep records of symptoms and other problems. Other people, such as other family members or hired caregivers, can help with physical care, but the primary caregiver is in charge of talking with the hospice team. They are also responsible for making sure that other caregivers are in the home, as needed.

For people getting hospice care in a setting other than at home, the primary caregiver is still part of the hospice care team. The caregiver attends team meetings, communicates about the patient’s needs, and helps make care decisions.

If the person with cancer doesn’t have someone who can be the primary caregiver, they should talk with the hospice team about other options. Options may depend on insurance and hospice agencies or programs in the area.

The hospice team

The hospice team has many health care professionals to help manage the needs of the individual with cancer. The hospice team will often include:

• A hospice doctor or medical director who will often work with the person’s cancer or primary care doctor
• Hospice nurses
• Social workers
• Counselors or therapists
• Dietitians
• Home health aides
• Clergy, chaplain, or other spiritual leaders
• Trained volunteers

Staff who work in hospice are trained in the special issues related to death and dying.  

The hospice team will hold meetings and report regularly with the person with cancer, their caregiver and loved ones. The meetings are to review how the person in hospice is doing and to make sure that all their needs are being met. This includes symptom relief and social, emotional, and spiritual support.

Where is hospice care given?

Hospice care can be given in many settings. This might include a person’s home, a  free-standing hospice facility, or through hospice programs in hospitals, nursing homes, assisted living centers, or other health care settings.

Home hospice care

Most people get hospice care at home. For patients receiving in-home hospice care, the hospice nurses make regular visits and are always available by phone 24 hours a day, 7 days a week. Other members of the hospice team may also visit based on the patient's needs and insurance coverage.

People who live in places like residential facilities, certain types of assisted living, or nursing homes can often get hospice care there. This might be called in-home care since the facility is the patient's home. A primary caregiver is still needed, but staff at the facility may help provide some of the physical care depending on the type of facility and insurance coverage for hospice services.

Caregiving in home hospice

Home hospice often requires that someone be home with the patient 24 hours a day, 7 days a week. This will be the primary caregiver who will be trained to give much of the hands-on care. But the primary caregiver might need some help with this.

Finding someone who can be in the home around the clock might be a challenge. This is especially true for people who live alone or whose partner or adult children have full-time jobs. But creative scheduling and teamwork among friends and loved ones can help deal with this.  The hospice team may be able to find volunteers to stay with the patient when needed as well.

Members of the hospice staff will visit regularly to check on the person in hospice and their caregivers and loved ones. They will make sure that any symptoms are under control and give any needed care or services.

How does home hospice get set up?

Once the decision has been made to start hospice care, a hospice team member visits the person with cancer and their loved ones. During this visit, a plan to address care needs will be decided on together. Then the hospice team will arrange for any services that are needed. Then hospice nursing visits are set up to see how the person in hospice is doing. This allows for ongoing updates to the plan to address care needs as they often change.  

To handle around-the-clock needs or crises, home hospice programs have a nurse who answers phone calls day and night, makes home visits, or sends out the team members you may need between scheduled visits. Medicare-certified hospices must provide nursing, pharmacy, and doctor services around the clock.

In an emergency, call hospice before calling 911 or going to the hospital. The hospice team will tell you what to do and set things up (such as calling 911), if needed.

If the person in hospice goes to the hospital or emergency room without first setting things up through hospice, hospice benefits might be put at risk and the person in hospice may be asked to pay for the visit or hospital stay.

Inpatient or free-standing hospices

Many communities have free-standing hospices. These facilities provide hospice care in an inpatient setting but are different from hospitals. They include the same services as other types of hospice, but can also provide a higher level of support if symptoms can’t be managed well enough in a home-setting.  

The free-standing hospice might be helpful to people who don’t have caregivers available at home or need around-the-clock physical care. They might also be able to give respite care when the primary caregiver isn't available for a period of time.

Nursing home or long-term care facility-based hospices

Many nursing homes and other long-term care facilities have small hospice units. They might have nursing and other staff trained to care for people in hospice. Or they might work with hospice agencies in the local area to provide care. These can be a good option for people who need hospice care but don’t have someone to take care of them at home.

Hospital-based hospices

Some hospitals have hospice programs. This gives people in hospice and their loved ones easy access to support services and around-the-clock care to help control symptoms. Some hospitals have a special hospice unit, while others use a hospice team that visits people in hospice on any nursing unit. In other hospitals, the staff on the inpatient unit will act as the hospice team.

Who pays for hospice care?

Government programs

• Medicare covers hospice care costs through the Medicare Hospice Benefit. See www.medicare.gov/coverage/hospice-care.
• Veterans' Administration (VA) benefits also cover hospice care. See www.va.gov/GERIATRICS/Guide/LongTermCare/Hospice_Care.asp.
• Medicaid hospice coverage is different in each state. See www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html.

Private insurance

Many work-based and private insurance plans provide some coverage for hospice care. Check with your insurance company to find out whether your plan covers hospice services and in what settings (where). Each insurance plan has its own criteria that people need to meet to be in hospice. You should also check to see what is covered.

If you are not insured or your insurance doesn’t cover the full cost of hospice

Some hospice providers offer care at no cost or at a reduced rate based on your ability to pay. They can often do this because of donations, grants, or other sources. Nearly all hospices have financial staff members who can help you with this, answer your questions, and help you get the care you need.