What is hospice care?

Hospice care is for people who are nearing the end of their lives. Hospice care is designed to relieve or decrease pain, or other symptoms, and provide as much quality time as possible with family and friends. But unlike other medical care, the focus of hospice care is no longer on curing or treating the underlying disease. The goal of hospice care is to provide the highest quality of life for whatever time remains. Hospice professionals often say that their focus is on caring, not curing, and that they treat the individual, not the disease.

Who is hospice care for?

Many people receiving hospice care have cancer, but hospice is available for people with any terminal illness, such as heart disease, dementia, chronic obstructive pulmonary disease or any other condition. In general, hospice care is reserved for those who've been evaluated by a doctor and have six months or less to live. This is the guideline that Medicare — which pays for most hospice care — follows, and most private insurers have adopted Medicare's guideline as well.

When should hospice care be an option?

Hospice professionals stress that the longer someone is in hospice care, the better chance of a peaceful and high-quality experience. Waiting until the very end and then rushing into hospice at the last minute can be traumatic for you or your loved ones, and does not allow time for symptoms to be properly managed.

Where is hospice care provided?

With hospice care, instead of your loved one spending their last weeks or months in a hospital, they're with loved ones in your home or another homelike setting. Although most hospice care is provided at home, hospice is often available at nursing homes or assisted living residences. Some residential facilities designed specifically for hospice care also exist.

While most people using hospice care receive care at home, sometimes it's necessary to be admitted to a hospital. For instance, anytime a symptom can't be adequately managed by the hospice care team in the home setting, the person needing hospice care may need to be temporarily admitted to the hospital. Also, your loved one can be admitted to the hospital for up to five days in order to give you a rest from the stress of caregiving. This is called respite care. In addition, some people would prefer to die in the hospital rather than at home. In such cases, your loved one can be admitted to a hospital for the final days or hours of life. 

What services are included in hospice care?

The range of hospice care services varies depending on the program you choose, and the status of your loved one's disease. You and your loved ones are actively involved in the care. Generally, hospice care services include:

• Care directed by a doctor who has training in providing hospice and end-of-life care — your loved one's primary physician remains in control, with assistance from the hospice care team
• Help with daily needs, such as bathing, cooking, cleaning, or other needs
• If requested, visits from a chaplain
• Counseling services, both for the person in hospice and for the family members
• Social services support
• Respite care
• Medical equipment — such as hospital beds, bedside commodes, wheelchairs, oxygen — and medical supplies
• Medications to help control pain and symptoms
• Bereavement care for the family following the death
• Access to other therapies, such as physical, occupational, speech and dietary therapies, as needed depending on your loved one's condition

Who's involved in hospice care?

Hospice care services offer a team of professionals that work to maximize comfort for the terminally ill person and to help support the family members and loved ones. A hospice care team consists of:

• Doctors. Both your loved one's primary care doctor and the hospice's medical director oversee their care. The primary care doctor remains the main doctor, but the hospice medical director often has added expertise in symptom management and end-of-life care that can supplement the care provided by the primary doctor.
• Nurses. Nurses come to your home or other care setting for regular evaluations and report back to doctors. Nurses also provide help and support for family members and friends. They can address any concerns you have about end-of-life issues and symptom management. How often nurses visit depends on how much care you loved one needs. Nurses are available at all times for emergency visits in case a change or crisis develops. They can also offer support and guidance at the time of death.
• Home health aides. Home health aides and homemaker services can assist in caring for the person in hospice care. Home health aides provide extra support for routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors are available. Many people in hospice care have connections to some spiritual services in their community, but the hospice can provide additional services, if desired.
• Social workers. Social workers provide counseling and support. They can also help you sort out insurance and other financial concerns.
• Volunteers. Trained hospice volunteers provide a variety of services, such as staying with the person in hospice while loved ones or family run errands, providing transportation assistance or just participating in activities that provide meaning and enjoyment, such as playing cards with or reading to the person in hospice care.
• Bereavement counselors. Trained bereavement counselors offer support and guidance for family members during and after the death of the person in hospice. Bereavement counselors continue to provide support for up to a year after your loved one's death.

How is hospice care paid for?

Medicare, Medicaid and private insurance all may be used to pay for hospice care. Medicare is a common source of payment for many. To receive reimbursement from Medicare for hospice care expenses, in general:

• The person seeking hospice care must be eligible for Medicare Part A. Medicare Part A is the portion of Medicare that traditionally covers hospital and inpatient expenses. It also covers hospice care.
• Your loved one's doctor and hospice medical director must certify that your loved one is eligible to receive hospice services.
• The person seeking hospice care must agree to receive hospice care instead of treatments meant to treat or cure your illness.
• Hospice care must be provided by a Medicare-certified hospice program. Most hospice programs in the United States are certified by Medicare, but check to be sure.

Both Medicare and Medicaid help cover the cost of the hospice professional services, medications related to the terminal illness, and all supplies and equipment necessary to provide care within a home setting. Private insurance coverage varies.

Some hospice programs provide services on a sliding fee scale, based on your ability to pay. Check with officials at the hospice program about payment options. Most hospice programs have social workers and others who can talk with you to explain the various options.

Care over cure

Hospice care addresses two big fears a dying person may have — the fear of pain and the fear of being alone. The hospice staff administers appropriate pain relief, provides nursing care, and offers ongoing reassurance and support to your loved one and family members. Together, you can see to it that your loved one isn't alone during this last and important phase of life.