Does hospice mean someone there 24 hours? What hospice does and doesn’t do

The most common surprise families have about hospice is about hours. Many expect someone in the house day and night. That isn’t how hospice works, except during a crisis, and finding that out on the first night is hard. This note explains, with Medicare’s rules, what the hospice team does, who gives the day-to-day care, what’s there for you at 2 AM, and how families fill the hours in between.

The short answer

• Hospice is available around the clock. Nursing, a doctor and medicines must be available 24 hours a day, 7 days a week.¹
• Hospice is not a caregiver in the home around the clock. The team visits on a schedule, and the family, or caregivers the family arranges, give most of the daily care.
• During a crisis, nursing can be at the bedside for as much as 24 hours a day until symptoms settle.²
• When the family needs rest, respite care offers up to five days in a facility.²

Who’s on the team

Medicare requires every hospice to care for each person through a team that includes a physician, a registered nurse, a social worker, and a pastoral or other counselor.³ Around them are hospice aides, volunteers, therapists and grief counselors.

What each one does:

• The nurse manages pain and symptoms, teaches the family what to do, and coordinates the plan. The nurse is who you’ll see most.
• The hospice aide helps with bathing and personal care on scheduled visits.
• The social worker helps with the practical and emotional weight: paperwork, money worries, family conversations, planning.
• The chaplain offers spiritual support in whatever tradition the person has, or none.
• The physician oversees the care and works with the person’s own doctor if they want to keep one.
• Volunteers offer company, a short break for the caregiver, and help with errands.

What a normal week looks like

On routine home care, the nurse visits on the schedule set in the plan of care, and visits increase as needs grow. The aide may come several times a week for bathing. The social worker and chaplain visit as the plan calls for them.

The schedule isn’t fixed. It follows the person. When symptoms change, visits increase. Ask the nurse at the first visit how often each person on the team will come, and what would make visits more frequent.

What’s there at 2 AM

This is what hospice adds that a family can’t get anywhere else. Medicare requires nursing, physician services and medicines to be available 24 hours a day, every day.¹ In practice that means a phone line answered by a person, a nurse who can talk you through what you’re seeing, and a nurse who comes out when it needs a visit.

Keep the hospice number on the refrigerator. When something changes, call the hospice first, before 911. The hospice can change medicines, send a nurse or arrange a higher level of care. An emergency room visit the hospice didn’t arrange may not be covered.⁴

When a crisis comes

Sometimes symptoms flare beyond what visits can handle: pain that won’t come under control, hard breathing, agitation. Medicare calls this a period of crisis. Continuous home care brings nursing to the bedside for as much as 24 hours a day so the person can stay home through it. The care must be mostly nursing, with aides helping.² When the crisis passes, care goes back to the regular schedule.

Who gives the daily care

On most days, the family does, or caregivers the family hires. That means helping with meals, medicines on the schedule the nurse sets, turning and repositioning, toileting and keeping someone company. The hospice team teaches the family how, supplies the equipment and medicines, and checks in.

For people who live in a nursing home or assisted living, the facility’s staff gives the daily care and the hospice team works alongside them.

Outside of a crisis, the hospice benefit doesn’t pay for someone to stay in the home, and it doesn’t pay room and board.^2,4 Families fill the hours in different ways:

• Splitting shifts among family members, with a written schedule
• Hiring caregivers through a home care agency for nights or long stretches
• Using hospice volunteers for short breaks
• Using respite care, up to five days in a facility, when a caregiver needs to rest²
• Asking whether Medi-Cal, long-term care insurance or veterans’ benefits can help pay for caregivers

Questions to ask at the first visit

The first visit is the time to settle the hours, before a hard night tests the plan.

• How often will the nurse come, and the aide?
• What number do we call at night, and who answers it?
• If we need a nurse at night, how long until someone comes?
• Is there a supply of medicines at home for sudden pain or breathing trouble, and when do we use it?
• What should we do if Dad falls?
• When would continuous care be used, and how do we ask for it?
• How do we arrange respite care when we need it?

Write the answers down where everyone who helps with care can see them.

Caring for the caregiver

Hospice cares for the family too. The social worker and chaplain are there for the people giving care as well as the person receiving it. After a death, Medicare requires the hospice to offer grief support to the family for up to a year.⁵

If you’re the one giving care, tell the team how you’re doing. Exhaustion makes everything harder, and it’s something the team can help with if they hear about it early.