Hospice care: Comforting the terminally ill

If you or a relative has a terminal illness and you’ve exhausted all treatment options, you might consider hospice care. Find out how hospice care works and how it can provide comfort and support.

What is hospice care?

Hospice care is for people who are nearing the end of life. The services are provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support.

Unlike other medical care, the focus of hospice care isn’t to cure the underlying disease. The goal is to support the highest quality of life possible for whatever time remains.

Who can benefit from hospice care?

Hospice care is for a terminally ill person who’s expected to have six months or less to live. But hospice care can be provided for as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

Many people who receive hospice care have cancer, while others have heart disease, dementia, kidney failure or chronic obstructive pulmonary disease.

Enrolling in hospice care early helps you live better and live longer. Hospice care decreases the burden on family, decreases the family’s likelihood of having a complicated grief and prepares family members for their loved one’s death. Hospice also allows a patient to be cared for at a facility for a period of time, not because the patient needs it, but because the family caregiver needs a break. This is known as respite care.

Where is hospice care provided?

Most hospice care is provided at home — with a family member typically serving as the primary caregiver. However, hospice care is also available at hospitals, nursing homes, assisted living facilities and dedicated hospice facilities.

No matter where hospice care is provided, sometimes it’s necessary to be admitted to a hospital. For instance, if a symptom can’t be managed by the hospice care team in a home setting, a hospital stay might be needed.

Who’s involved in hospice care?

If you’re not receiving hospice care at a dedicated facility, hospice staff will make regular visits to your home or other setting. Hospice staff is on call 24 hours a day, seven days a week.

A hospice care team typically includes:

• Doctors. A primary care doctor and a hospice doctor or medical director will oversee care. Each patient gets to choose a primary doctor. This can be your prior doctor or a hospice doctor.
• Nurses. Nurses will come to your or your relative’s home or other setting to provide care. They are also responsible for coordination of the hospice care team.
• Home health aides. Home health aides can provide extra support for routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors can provide spiritual care and guidance for the entire family.
• Social workers. Social workers provide counseling and support. They can also provide referrals to other support systems.
• Pharmacists. Pharmacists provide medication oversight and suggestions regarding the most effective ways to relieve symptoms.
• Volunteers. Trained volunteers offer a variety of services, including providing company or respite for caregivers and helping with transportation or other practical needs.
• Other professionals. Speech, physical and occupational therapists can provide therapy, if needed.
• Bereavement counselors. Trained bereavement counselors offer support and guidance after the death of a loved one in hospice.

How is hospice care financed?

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. While each hospice program has its own policy regarding payment for care, services are often offered based on need rather than the ability to pay. Ask about payment options before choosing a hospice program.

How do I select a hospice program?

To find out about hospice programs, talk to doctors, nurses, social workers or counselors, or contact your local or state office on aging. Consider asking friends or neighbors for advice. The National Hospice and Palliative Care Organization also offers an online provider directory.

To evaluate a hospice program, consider asking:

• Is the hospice program Medicare-certified? Is the program reviewed and licensed by the state or certified in some other way? Is the hospice program accredited by The Joint Commission?
• Who makes up the hospice care team, and how are they trained or screened? Is the hospice medical director board certified in hospice and palliative care medicine?
• Is the hospice program not-for-profit or for profit?
• Does the hospice program have a dedicated pharmacist to help adjust medications?
• Is residential hospice available?
• What services are offered to a person who is terminally ill? How are pain and other symptoms managed?
• How are hospice care services provided after hours?
• How long does it take to get accepted into the hospice care program?
• What services are offered to the family? What respite services are available for the caregiver or caregivers? What bereavement services are available?
• Are volunteer services available?
• If circumstances change, can services be provided in different settings? Does the hospice have contracts with local nursing homes?
• Are hospice costs covered by insurance or other sources, such as Medicare?

Remember, hospice stresses care over cure. The goal is to provide comfort during the final months and days of life.