Hospice respite care: a break for the caregiver

What counts as respite care?

Inpatient respite care is short-term care in a facility, provided only when necessary to relieve the family members or other people caring for the patient at home (42 CFR 418.204). The reason is the caregiver's: exhaustion, an illness or surgery, a family event, a trip that cannot wait. The patient's symptoms do not have to have changed. The hospice team keeps visiting during the stay, and the person comes home when it ends.

How often can you use respite?

Up to 5 consecutive days at a time, on an occasional basis. The rule sets the 5-day limit per stay and says respite is occasional; it does not set a number of stays per year. In practice the team plans respite with you around what the caregiver needs and what a contracted facility has available. Days beyond the fifth in one stay are paid at the routine home care rate, so the hospice will tell you before a stay runs long.

Where does the person stay?

In a facility the hospice has a contract with: a nursing facility, a hospital or a hospice inpatient unit that can provide 24-hour nursing. The hospice arranges the bed, the clinical handoff and the transport, and its team continues to visit there. Respite cannot be used by a person who already lives in a facility where staff provide the daily care.

What does respite cost?

Under Medicare the person owes 5% of the Medicare amount for each day of inpatient respite care, up to the inpatient hospital deductible in a year (42 CFR 418.400). The daily amount changes each year, so we tell you the figure before a stay. Under Medi-Cal, ask us; we check each person's coverage before care starts. Room and board during respite is part of the respite day, not an extra charge.

How do you ask for respite?

Tell the nurse or the social worker, at a visit or by phone at (877) 258-7129. Say what you need and when. The team confirms a contracted facility with a bed, explains the 5% cost, and arranges the dates. If the caregiver's need is sudden, say so: a bed can sometimes be found within a day or two, though it depends on what facilities have open.

Signs the caregiver needs a break

The National Institute on Aging's advice to caregivers is to take care of yourself too. These are the signs families recognise too late.

• Sleeping only in snatches, for weeks.
• Getting sick, or skipping your own appointments and medicines.
• Snapping at the person you are caring for, and then feeling guilty.
• No day off in a month, and no one else who knows the routine.
• Dreading the next night.

Respite is not continuous home care

Continuous home care is for the patient, during a short crisis of uncontrolled symptoms, with nursing at the bedside for 8 hours or more a day until the crisis settles. Respite is for the caregiver, in a facility, when nothing about the patient's symptoms has changed. If what you need is both, tell the nurse; the team sorts out which applies. Read 24-hour care.

Common questions about respite care

Read more

24-hour care, the levels of hospice care, what hospice does and does not provide and bereavement and caregiver support.