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

Who provides hospice care?

Hospice care is provided by a hospice service. The hospice service's team of health care professionals will work with the patient's primary caregiver (usually a family member) to provide care and support 24 hours a day, 7 days a week.

The primary caregiver

When someone enters into hospice care, they are asked to pick someone to be their primary caregiver. Usually this is a family member or close friend. The primary caregiver works with the hospice team and patient to develop a care plan based on the patient's specific needs and preferences. The primary caregiver continues to be the main person to help make decisions for the patient throughout the length of hospice care.

For patients receiving in-home hospice care, the primary caregiver not only provides most of the physical care for the patient, but also helps with keeping records of symptoms and other problems. The primary caregiver can share the physical care responsibilities with other family members or hired caregivers, but takes responsibility for communication with the hospice team, and for scheduling caregivers in the home as needed.

For patients getting hospice care in a setting other than at home, the primary caregiver is considered to be a part of the hospice care team. The primary caregiver attends team meetings, helping to communicate the patient's needs and make care decisions.

If there is no family available to take on the primary caregiver role, the patient needs to work with the hospice team member who first comes to talk about services. They will also need to talk to their insurance company. There may or may not be other care setting options available, depending on insurance coverage and the types of hospice agencies or programs that are available.

The hospice team

In most cases, an interdisciplinary health care team manages hospice care. This means there are many health care professionals involved in helping to manage the patient's care, based on each patient's needs and preferences. Typically, the hospice doctor or medical director is in charge of the patient's care, though the cancer doctor and/or primary care doctor can be involved, too. Doctors, nurses, social workers, counselors, dietitians, home health aides, clergy, therapists, and trained volunteers work together to help the patient and primary caregiver make decisions about the care that's needed. There will be regular reports, as well as family and care team meetings to evaluate the patient's status to be sure all the patient's needs are being addressed. Hospice care includes palliative care to relieve symptoms and give social, emotional, and spiritual support.

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 depending on the patient's needs and insurance coverage. For patients getting hospice care in places other than their home, regular visits or around-the-clock care may be options depending on the type of care setting, the needs of the patient, and insurance coverage.

Hospice care staff members are kind and caring. They communicate well, are good listeners, and want to support families during the last stage of an advanced illness. They’re usually specially trained in the unique issues surrounding death and dying and are given ongoing education and support to help with the emotional demands of the job.

Hospice volunteers are a big part of the hospice team, too. They play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services that range from hands-on personal care to working in the hospice office or fundraising.

Where is hospice care given?

Hospice agencies most often provide services in the patient's home. Hospice care can also be provided by free-standing or independent facilities specially designed to provide hospice care, or through programs based in hospitals, nursing homes, assisted living centers, or other health care systems. Some hospice agencies offer both care in the home and care in an inpatient facility.

In any setting, hospice care is designed to be available 24 hours a day, 7 days a week. Your doctor, hospital social worker, case manager, or discharge planner can be helpful in deciding which type of hospice program is best for you and your family.

Home hospice care

Most people get hospice care at home. People who live in places like residential facilities, certain types of assisted living, or nursing homes can get hospice care there, too. If hospice care is needed for a person living in one of these facilities, it may be considered in-home care since the facility is the patient's home. Health insurance coverage can vary on this.

Most hospice programs offer home hospice services. Although home hospice programs are staffed by nurses, doctors, and other professionals, the primary caregiver is usually a family member or friend who’s responsible for around-the-clock supervision of the patient. For care given in the home, this person will need to be with the patient most of the time and will be trained to provide much of the hands-on care. For care given in another facility, a primary caregiver is still needed, but staff may help provide some of the physical care depending on the type of facility and insurance coverage for hospice services.

It’s important to know that home hospice may require that someone be home with the patient 24 hours a day, 7 days a week. This may be a problem for people who live alone or whose partner or adult children have full-time jobs. But in most cases, creative scheduling and good team work among friends and loved ones can overcome this problem. Members of the hospice staff will visit regularly to check on the patient, family, and caregivers. They will make sure that any symptoms are under control and give any needed care and services.

Care begins when the patient is admitted to the hospice program, which generally means that a hospice team member visits you at home to learn about you and your needs. Sometimes they will visit you in the hospital if you have decided to receive hospice care but haven't yet been discharged home. Once at home or when care is set to start at home, your primary caregiver is responsible for physical care or for scheduling people to help with your care. The hospice team may be able to find volunteers to stay with the patient when needed, too. Hospice nursing visits are set up so that you can be re-evaluated regularly.

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

In the case of an emergency, call hospice before calling 911 or going to the hospital. The hospice team will tell you what to do and make arrangements (such as calling 911), if needed. If the person in hospice goes directly to the hospital or emergency room without first making arrangements through hospice, hospice benefits might be put at risk and insurance may not want to pay for the visit or hospital stay. 

Inpatient hospices and free-standing or independent hospices

Many communities have inpatient hospice facilities. These may be operated by a hospice agency that also offers in-home care. Or, they can be free-standing, independently owned hospices that may or may not also offer in-home services. The free-standing hospice can be helpful to patients who don’t have caregivers available at home or need around-the-clock physical care. Respite care (temporary care for times when the primary caregiver isn't available) may also be provided in some inpatient hospice facilities.

Hospital-based hospices

Hospitals often have a hospice program. This gives patients and their families easy access to support services, and allows the patient to get around-the-clock care to help get control of symptoms. Some hospitals have a special hospice unit, while others use a hospice team that visits patients with advanced disease on any nursing unit. In other hospitals, the staff on the patient’s unit will act as the hospice team. The patient returns to in-home hospice care when they are again comfortable.

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 specially trained nursing staff to care for hospice patients, or they might make arrangements with home health agencies or independent community-based hospices to provide care. This can be a good option for people who need hospice care but don’t have someone to take care of them at home.

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.
• The coverage of hospice care by Medicaid is optional and varies by state. See www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html.

Private insurance

Many work-based and private insurance plans provide at least some coverage for hospice care. It's best to check with your insurance company because there are different types of plans available that may or may not cover hospice services. There are also different ways a person can be considered eligible for hospice care and what costs are covered can vary based on the health plan you have.

If you are uninsured

For people who are not insured, or who may not have full coverage for hospice services, some hospice organizations may 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 support staff who can help you with this, answer your questions, and help you get the care you need.