Hospice respite care is a short stay for your loved one in a hospice inpatient unit, hospital, or nursing home so that you, the family caregiver, can rest. Under the Medicare hospice benefit, the hospice arranges it, your loved one can stay up to 5 days at a time, and you can use it more than once, but only on an occasional basis. You pay no more than 5% of the Medicare-approved amount for the stay.
Respite care is part of hospice care for a reason. Caring for someone near the end of life is hard work, often around the clock. Hospice respite care gives you a few days to sleep, see a doctor, handle family matters, or simply breathe, while your loved one is cared for by trained staff and the hospice team.
What is hospice respite care?
Respite means a break. In hospice, respite care is one of four levels of care that Medicare defines. The other three are routine home care, continuous home care during a crisis, and general inpatient care for symptoms that cannot be managed at home. You can read more about how these fit together in does hospice cover 24-hour care.
Respite care is different from the rest because it exists for the caregiver, not because of a change in your loved one’s condition. Your loved one does not need to be getting worse to qualify. The reason for the stay is that the primary caregiver needs relief.
Does Medicare cover respite care under hospice?
Yes. If your loved one is enrolled in the Medicare hospice benefit, inpatient respite care is covered. Here is how Medicare describes it:
- Where: in a Medicare-approved facility, such as a hospice inpatient facility, a hospital, or a nursing home
- How long: up to 5 days each time
- How often: more than once, but only on an occasional basis
- Who arranges it: your hospice provider
- What you pay: up to 5% of the Medicare-approved amount for the stay
To give you a sense of scale, Medicare’s own example says that if it approves $100 per day for inpatient respite care, you would pay $5 per day. The national base rate Medicare pays hospices for a day of inpatient respite care is roughly $546, before it is adjusted for local wages, according to the Centers for Medicare and Medicaid Services hospice payment rule. In practice, your share for a few days of respite care is usually modest, and the exact amount can change each year. If your loved one has a Medigap policy, it helps cover the respite coinsurance.
You can check the current rules on the Medicare hospice care page. For the full picture of what hospice pays for and what it does not, see who pays for hospice care at home.
How often will hospice pay for respite care?
Medicare does not set a fixed number of respite stays per year. The rule is that respite care is for occasional use. Each stay can last up to 5 days in a row. If your loved one stays longer than 5 days, Medicare pays the hospice at the lower routine home care rate for the extra days, so the hospice may ask you to plan for a return home or talk about other care options.
What counts as occasional is up to the hospice team to judge, based on your loved one’s plan of care and your situation. Some families use respite care once, others a few times over a long hospice stay. If you think you will need regular breaks, say so early, and ask how the hospice program handles repeat requests.
Who can use hospice respite care?
Your loved one can use respite care if they are enrolled in hospice and receiving hospice care at home. In other words, they must meet hospice eligibility criteria: a doctor’s certification of a terminal illness with a life expectancy of six months or less, a choice of comfort care over treatment to cure the illness, and a signed hospice election.
There is one important limit. Under Medicare’s rules, hospice respite care is not available to patients who already live in a nursing home. The benefit is meant for people who live at home and have a family member or other caregiver looking after them there.
How is respite care different from regular inpatient hospice care?
Both happen in a facility, and both are short-term inpatient care. The difference is the reason:
- Inpatient respite care is for the caregiver. Your loved one’s needs may be stable. You simply need a break.
- General inpatient care is for the patient. It is used when pain or other symptoms cannot be controlled at home, and it lasts until the symptoms are under control. There is no 5-day limit and no respite coinsurance.
If your loved one’s symptoms get worse during a respite stay, the hospice team can change the level of care.
How to request hospice respite care
You do not have to wait for the hospice to offer it. Here is what usually works:
- Call your hospice nurse or social worker. Tell them you need a break and roughly when. Be honest about how tired you are. You do not have to wait until you are in crisis.
- Give as much notice as you can. The hospice needs to find a bed in a contracted facility. Some can arrange respite within a day or two, others need more time.
- Ask where your loved one will stay. The hospice decides which facility, but you can ask about the options, the distance, and whether you can visit.
- Talk about transport. Ask how your loved one will get there and back, and whether the hospice arranges it.
- Confirm the dates and your cost. Ask for the start and end dates in writing, and what your 5% coinsurance will be.
Some caregivers feel guilty asking for respite care. Please do not. The hospice team knows that a rested caregiver gives better care, and respite care services are part of what the hospice benefit is for.
What happens to your loved one during a respite stay
During the respite stay, facility staff take care of daily needs like meals, medicine, and personal care. The hospice care team stays in charge of the plan of care, keeps managing symptoms, and continues to visit. Your loved one keeps getting the same hospice services, just in a different place.
You can usually visit whenever you like, but you do not have to. The point is for you to rest. Many caregivers find it helps to call once a day, or ask the staff to call if anything changes.
What to pack for a respite stay
A small bag with familiar things makes the stay easier for your loved one. Consider packing:
- A list of all medicines, doses, and times, plus any medicines the hospice asks you to bring
- A short note about daily routines: sleep times, favorite foods, how they like to be moved, what calms them
- Comfortable clothes, pajamas, and non-slip socks or slippers
- Glasses, hearing aids, dentures, and chargers for any devices
- Toiletries they like, such as lotion, lip balm, or a hairbrush
- A favorite blanket, pillow, or photos from home
- Music, audiobooks, or anything else that brings comfort
- Names and phone numbers of family members to call
- Copies of advance directives, such as a do-not-resuscitate order or health care proxy
Label everything with your loved one’s name.
Hospice respite care vs. in-home respite care
The Medicare hospice benefit covers inpatient respite, meaning your loved one leaves home for a few days. It does not pay for a respite worker to come to your home so you can go out. For many families, that is the kind of break they really want.
In-home respite usually comes from other sources:
- Hospice volunteers who can sit with your loved one for a few hours
- Family and friends taking turns on a set schedule
- Private home care agencies, paid out of pocket or through long-term care insurance
- Medicaid waiver programs in many states
- VA caregiver support for veterans enrolled in VA health care
- Adult day care centers, if your loved one is still able to go out
Our guide to in-home respite care explains these options in detail. If your loved one is not in hospice, see our guide to respite care for elderly parents.
Signs you may need respite care
Caregivers often wait too long. You may need a respite stay if you notice:
- You are not sleeping, or you sleep but never feel rested
- You feel short-tempered, numb, or tearful most days
- You are skipping your own doctor visits or medicines
- You are afraid you will make a mistake with care
- You have an event you cannot miss, like a wedding, a surgery, or a family emergency
Any one of these is reason enough to call the hospice. For more support, read our guide for family caregivers. And if you want to picture what the rest of hospice care looks like, see what hospice at home looks like.
Questions to ask about hospice respite care
- How do we request respite care, and how much notice do you need?
- Which facilities do you use, and can we visit one before the stay?
- Who will check on my loved one during the stay, and how often?
- Will you arrange transport there and back?
- What will our 5% coinsurance be for the stay?
- What should we bring, and what will the facility provide?
- How often can we use respite care over the coming months?
- Do you have volunteers who can give us short breaks at home?
