Respite in hospice: how the inpatient respite benefit works and how families use it

Somebody mentioned respite, and you did not ask what it meant because you did not want to look like you were giving up. You are not. Respite is written into the benefit precisely because the people who designed hospice knew the family would need to lie down. Here is hospice respite care, how many days, and how to ask for it.

How many days is hospice respite care?

Five, at a time. The federal hospice rule says respite may not be reimbursed for more than five consecutive days at a time, and Medicare's booklet says it the family way: you can stay up to 5 days each time you get respite care, you can get it more than once, but only on an occasional basis. The National Institute on Aging's respite page summarizes the same benefit: for a person receiving hospice care, Medicare will cover most of the cost for up to five consecutive days of respite care in a hospital or skilled nursing facility.

Occasional is not defined by a number. It is the hospice's judgment, made with you. A family that needs it every month is a family that should also be talking about the other ways to get hours back, which come later on this page.

What respite is, and what it is for

The rule is unusually plain about the purpose: respite is short-term inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual. It is the one part of the hospice benefit written for you rather than for her symptoms. She goes, for up to five days, to a place the hospice arranges: a hospice inpatient facility, hospital, or nursing home that Medicare approves. The hospice team continues to be her hospice while she is there.

Because it means she leaves the house, it is a different thing from the respite most people picture, which is someone else coming in. The NIA describes respite in the broad sense as short-term relief for primary caregivers that may last anywhere from a few hours to several weeks at a time, at home, in a health care facility, or at an adult day care center. The hospice benefit pays for the inpatient kind. The at-home kind, for a hospice family, is done by relatives and volunteers or hired privately.

Who pays for respite, and what does it cost?

Medicare pays most of it. Medicare's hospice page says you may pay 5% of the Medicare-approved amount for inpatient respite care, and the booklet gives the worked example: if Medicare approves $100 per day, you pay $5 per day and Medicare pays $95. The booklet adds that the amount you pay can change each year, and the hospice page says your copayment cannot be more than the inpatient deductible amount. Room and board is the line people trip over: the benefit does not cover room and board where she lives, but when the hospice arranges short-term inpatient or respite care, Medicare covers the stay in the facility.

How to ask for it

You do not have to justify it as an emergency, because the rule does not require one. You say to the nurse or the social worker: I need respite. I have not slept in three weeks. I need the five days. Then you ask three practical questions: where would she go, how soon can it be arranged, and what happens with her medicines and her equipment during the stay. The hospice makes the arrangements; the booklet says so in as many words.

If you are afraid she will not come back, say that too. The social worker has heard it. A respite stay is defined as short-term and the intent is to return home. If her condition changes during the stay, the hospice will talk to you about the levels described in the four levels of hospice care.

What families do with the days

Sleep, first. Not the kind you get in a chair. Then the things a dying parent does not cancel: another funeral, a grandchild's wedding, a court date, your own surgery, a child in another state who needs you for a weekend. Some families use the days to have the honest meeting about what comes next that they cannot have across her bed. Some use them to do nothing, and are right to. The rule does not ask what you did with the five days. It asks only that you needed relief, and you did.

What if she does not want to leave the house?

Then the inpatient benefit may not be the answer, and you are back to getting hours from people rather than from a building. The options, honestly:

• Relatives and friends, scheduled. The NIA's end-of-life care page says a family member or friend can give the caregiver a break with small daily chores, and tells the primary caregiver to ask for help when you need it and accept help when it's offered. Ask for specific hours, not general willingness.
• Hospice volunteers. Volunteers are on the booklet's team list. Ask whether yours can sit for a block of time.
• Hired non-medical help, privately paid. Missouri calls this private duty or private pay care: aide personal care, respite or companion care, paid from private funds or insurance, with no physician order needed. Medicare does not pay for it. It is a person in the house so you can be out of it, or asleep in it.

The night-by-night version, with a rotation sheet, is in sleeping in shifts.