The hospice nurse has been out to the house. The hospital bed arrives Thursday. And somewhere in the paperwork, you realized nobody from hospice will be there overnight. If your parent is starting hospice at home, you’re probably asking the same thing most families ask: do we still need a caregiver?
Often, yes. Hospice and home care do different jobs, and they work best side by side. This guide explains what each one covers, where the gaps usually are, and how to set things up so nothing falls through.
What does hospice actually do at home?
Hospice is care focused on comfort, not cure. Under Medicare, a person with Part A qualifies when their hospice doctor and regular doctor (if they have one) certify they’re expected to live six months or less, they choose comfort care instead of treatment to cure the illness, and they sign a statement choosing hospice. Medicare says hospice is usually given at home.
The hospice team can include doctors, nurses, social workers, counselors, hospice aides, homemakers, and volunteers. Depending on your parent’s plan of care, Medicare’s hospice benefit can cover:
- Nursing care and doctor services.
- Medical equipment, like wheelchairs and walkers, and supplies, like bandages and catheters.
- Prescription drugs for pain and symptom control.
- Hospice aide and homemaker services.
- Social work, dietary counseling, and grief and loss counseling for you and your family.
- Short-term inpatient care for pain and symptoms, and short-term respite care.
Medicare also says a hospice nurse and doctor are on call 24 hours a day, 7 days a week. That means you can call for support and care any time, day or night. It doesn’t mean someone staying in the house.
Will hospice send someone to stay with Mom all day?
Usually not, and this surprises a lot of families. The National Institute on Aging says some people think hospice provides around-the-clock custodial care at home, but this is rarely the case. Most of the day-to-day care of a person who is dying is provided by family and friends. The hospice team visits regularly and coaches the family on how to give care.
Hospice does have a level of care called continuous home care. CMS describes it as mainly nursing care, given only during brief periods of crisis and only as needed to keep the patient at home. It isn’t a standing daily shift.
So the hours between visits belong to someone. For many families, that’s a daughter with a full-time job, a spouse who is already exhausted, or a son who lives two hours away.
Who does what when hospice and home care work together?
Think of it as two teams with one goal: your parent comfortable at home. Here’s a common split.
- Hospice: pain and symptom management, comfort medications, equipment and supplies, nurse visits, the on-call line, and emotional and spiritual support.
- Home care: the hours in between. Bathing and changing, help moving and repositioning safely, small meals, laundry and dishes, and someone sitting close so your parent isn’t alone.
- Family: the decisions, the visits, and the relationship only you can offer. With help in place, you get more of that time back.
One line matters most. A home care caregiver doesn’t manage pain or symptoms. When something changes, like new pain, restless breathing, or a fall, the first call usually goes to the hospice nurse. Ask your hospice team when they want you to call them and when to call 911. Medicare advises hospice patients to contact the hospice team before getting other care, like a trip to the emergency room, or they might have to pay the full cost. Keep the hospice number on the fridge and in every caregiver’s phone.
How do we know how much home care to add?
Start with the gaps, not a number. Write out an ordinary 24 hours and mark when hospice is there, when family is there, and when nobody is. Then look closely at three things:
- Nights. If your parent wakes up, needs turning, or tries to get out of bed, someone needs to be awake or close by. Our guide to 24-hour, overnight, and live-in care explains the options.
- Personal care. Bathing and changing a person in bed is physical work. Hospice aide visits help, but they come and go.
- The family caregiver’s limits. If one person is doing everything, plan for their sleep and their breaks now, before they hit a wall.
Needs often grow as the weeks go on. Set up help that can add hours without starting over with someone new.
What about a break for the family caregiver?
Medicare’s hospice benefit includes short-term respite care. If the usual caregiver needs rest, the hospice can arrange a stay of up to 5 days in a Medicare-approved facility, like a hospice inpatient facility, hospital, or nursing home. You can use it more than once, but only on an occasional basis. Medicare says you may pay 5% of the Medicare-approved amount for inpatient respite care.
That helps, but it means your parent leaves home for those days. Many families want a break without a move. In-home respite care means someone steps in at home for a few hours or a night, so you can sleep, see your kids, or sit outside for an hour without guilt.
Who pays for home care during hospice?
The hospice benefit pays for the hospice team’s care. Because round-the-clock custodial care is rarely part of hospice, extra caregiver hours need another way to pay. Families can pay privately, and Oregon Medicaid’s in-home services may help for people who qualify. Our guide to Medicaid home care in Oregon explains how that works.
If your parent already gets Medicaid in-home services, talk with their case manager when hospice starts, so both plans fit together. To ask what your parent may qualify for, call the Aging and Disability Resource Connection of Oregon at 1-855-673-2372.
Can my parent leave hospice if things change?
Yes. Medicare says you always have the right to stop hospice care at any time. Hospice is given in benefit periods: two 90-day periods, then an unlimited number of 60-day periods, with the hospice doctor recertifying along the way. Private home care isn’t part of the hospice benefit, so it can usually stay in place either way. If Medicaid pays for in-home hours, check with the case manager.
How Pasha Health can help
We provide personal care, overnight and 24-hour care, respite, meals, and help around the home. Every client gets a written care plan and one assigned caregiver for regular visits, and 24-hour care is covered by a small team. When a doctor orders it, care can include nurse-delegated tasks. We accept Medicaid. Our page on end-of-life comfort care explains more about this kind of support.
When you’re ready, schedule a 15-minute call. Tell us what hospice is covering and where the gaps are, and we’ll talk it through with you.
Questions families ask
Is home care the same as hospice?
No. Hospice is medical care focused on comfort, with a team that manages pain and symptoms and visits regularly. Home care is mostly non-medical help with daily life, like bathing, meals, and company, for the hours hospice isn’t there. Many families use both.
Does Medicare pay for a caregiver to stay with my parent during hospice?
Medicare’s hospice benefit covers hospice aide and homemaker services as part of the plan of care. But the NIA says round-the-clock custodial care is rarely part of hospice, and CMS limits continuous home care to brief periods of crisis. Extra hours can be paid privately, and Oregon Medicaid in-home services may help for people who qualify.
Who do we call if something changes at night?
Usually the hospice team. Medicare says a hospice nurse and doctor are on call 24 hours a day, 7 days a week. Ask your hospice team when to call them and when to call 911. If a home care caregiver is with your parent, make sure they have the hospice number and know when to use it.