Hospice care might be an option if you or a loved one has a terminal illness. Understand how hospice care works and how to select a program.
By Mayo Clinic Staff
If you or a loved one 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 to you or your loved one, as well as to your family and friends.
Hospice care is for people who are nearing the end of life. Hospice care 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 of hospice care is to support the highest quality of life possible for whatever time remains.
Hospice care is for a terminally ill person who's expected to have six months or less to live. This doesn't mean that hospice care will be provided only for six months, however. Hospice care can be provided for as long as the person's doctor and hospice care team certify that the condition remains life-limiting.
Hospice care isn't just for people who have cancer. 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 patients live better and live longer. Hospice care decreases the burden on the family, decreases the family's likelihood of having a complicated bereavement and prepares family members for their loved one's death.
In addition, there is a unique benefit of hospice that 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 rest in order to continue to care for his or her loved one. This is known as respite care.
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.
Keep in mind that 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 adequately managed by the hospice care team in a home setting, a hospital stay might be needed.
If you're not receiving hospice care at a dedicated facility, members of the hospice staff will make regular visits to your home or other setting to provide care and other services. 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 your or your loved one's care. Each patient gets to decide who his or her primary doctor will be while receiving hospice services. This can be your prior doctor or can be one of the hospice doctors.
- Nurses. Nurses will come to your or your loved one's home or other setting to provide care. Nurses 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 hospice volunteers offer a variety of services depending on your needs, from providing company or respite for caregivers to 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.
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. Be sure to ask about payment options before choosing 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, ask questions about the services offered. For example:
- 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?
- 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? Is residential hospice available?
- 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.
Jan. 28, 2016
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