Your father's doctor has gently said it may be time to think about hospice. You want him comfortable, and you want to keep him at home if you can. But you aren't sure what hospice will actually do. Will someone be there every day? Who do you call at 2 a.m.? What happens to his medicines?
Hospice is care for people with a serious illness that can't be cured, focused on comfort rather than treatment to cure the disease1. It supports the whole family, not just the patient. This guide walks through what hospice provides, step by step, so you know what to expect and what to ask. If you are still weighing comfort care against other options, see hospice vs. palliative care.
Who qualifies for hospice
Under Medicare, your parent qualifies for hospice when their hospice doctor and regular doctor, if they have one, certify a life expectancy of six months or less if the illness runs its normal course. Your parent also chooses comfort care instead of treatment to cure the terminal illness, and signs a statement electing hospice1.
Hospice isn't only for the last days. Care can continue past six months as long as a doctor recertifies that your parent is still terminally ill1. Many families say they wish they had started sooner, because the team's support helps most when there is time to use it. Our guide to end-of-life signs in older adults describes changes to watch for.
Hospice serves people with many illnesses, including cancer, heart and lung disease, kidney failure, stroke, Parkinson's disease and advanced dementia. If your parent has had repeated hospital stays, is losing weight or is spending most of the day in bed, it is reasonable to ask the doctor whether a hospice evaluation makes sense. See Parkinson's care and end-stage COPD.
The hospice care team
Hospice care is delivered by an interdisciplinary team. Federal rules require it to include at least a doctor, a registered nurse, a social worker and a pastoral or other counselor3. Most teams also include:
- Hospice aides. Help with bathing, personal care and comfort.
- Homemakers. Light household tasks related to care2.
- Therapists. Physical, occupational and speech therapy when they help with comfort or safety.
- Dietary counselors. Advice on eating and swallowing as the illness changes.
- Trained volunteers. Company, errands and short breaks for family. Hospices that take Medicare must use volunteers3.
- Your parent's own doctor. Your parent may keep their regular doctor or nurse practitioner as the attending provider1.
Together, the team writes a plan of care with your parent and family and updates it as needs change3. Ask for a copy and for the name of the nurse who will coordinate care.
What hospice provides
Once your parent elects hospice, Medicare's hospice benefit should cover everything needed for the terminal illness and related conditions1. That includes2:
- Doctor and nursing services. Regular nurse visits to manage pain and symptoms and teach the family.
- Medicines for comfort. Drugs for pain and symptom control related to the illness, with at most a small copayment per prescription.
- Medical equipment. Items like a hospital bed, wheelchair, walker, oxygen or bedside commode.
- Medical supplies. Bandages, incontinence supplies and other items related to the illness.
- Aide and homemaker help. Visits to help with personal care and light chores.
- Social work and counseling. Help with emotional, practical and family concerns, plus spiritual care if wanted.
- Short-term inpatient care. A stay in a hospital or hospice facility when pain or symptoms can't be managed at home.
- Respite care. A short stay in a facility so family caregivers can rest.
- Grief support. Bereavement counseling for the family after a death.
Four levels of hospice care
Federal payment rules describe four levels of care3: routine home care, the most common; continuous home care, with nursing in the home for longer periods during a crisis; general inpatient care for symptoms that can't be managed at home; and inpatient respite care, a short stay to give caregivers a break. The team decides with you which level fits at each point.
How often hospice visits
There is no single schedule. The plan of care sets how often each team member comes, based on your parent's needs. Early on, a nurse might visit once or twice a week and an aide a few times a week. As the illness progresses, visits usually increase.
Between visits, the hospice must have nursing services available 24 hours a day, seven days a week3. Keep the hospice phone number by the bed and on your phone. Call the hospice first when something changes, rather than 911, unless your parent has chosen otherwise. Calling the hospice lets the team respond in a way that fits your parent's wishes, and going to the hospital without the hospice arranging it can leave your parent responsible for the bill1. A DNR or POLST by the bed tells responders what your parent wants; see DNR vs. POLST.
Where hospice care happens
Most hospice care is provided wherever your parent lives: a private home, an assisted living community or a nursing home1. Some hospices also run inpatient facilities for short stays.
Hospice in a nursing home or assisted living
In a facility, hospice adds its team on top of the care staff already provide. The hospice nurse manages symptoms and medicines, aides may add personal care visits, and the social worker and chaplain support your parent and family. Medicare doesn't pay for room and board in a nursing home or assisted living while your parent is on hospice1, so those costs continue as before. Medicaid may cover room and board in a nursing home for residents who qualify. Ask the facility and the hospice how they share care, who to call for what, and how they communicate. See hospice in assisted living for details. See assisted living vs. nursing home.
What hospice doesn't cover
Once hospice starts, Medicare won't pay for1:
- Treatment to cure the terminal illness. If your parent wants to try curative treatment again, they can stop hospice.
- Care not arranged by the hospice. Care for the terminal illness must come from or be arranged by the hospice team.
- Room and board. At home, in a nursing home or in assisted living, except for short inpatient or respite stays the hospice arranges.
- Emergency room visits, hospital stays or ambulance rides unless the hospice arranges them or they are unrelated to the terminal illness.
Medicare still covers care for health problems unrelated to the terminal illness, with the usual cost-sharing1. You can ask the hospice for a written list of items, services and drugs it has decided aren't related to the illness, and why1.
Medicare Part A pays for hospice, and your parent pays nothing for covered hospice care from a Medicare-approved provider, apart from a small drug copayment and a possible 5% share for inpatient respite1. Medicaid and most private insurance also cover hospice.
Support for family caregivers
Hospice is designed to support the family as well as the patient. The team teaches family members how to give medicines, move your parent safely, prevent bedsores and recognize changes. The social worker can help with advance directives, finances and difficult family conversations4. See advance directives vs. living wills.
Respite care lets your parent stay in a Medicare-approved facility for a short time so you can rest2. After a death, hospices must offer bereavement support to the family for up to a year3. Caring for a dying parent is exhausting. Accept help, and see caregiver burnout and respite care.
Getting ready for hospice at home
A few practical steps make the first days of hospice at home go more smoothly.
- Pick the room. Choose a space on the main floor near a bathroom, with room for a hospital bed and a chair for visitors.
- Make a caregiving schedule. List who can cover mornings, evenings, nights and weekends, and where gaps remain.
- Gather the paperwork. Keep advance directives, any portable medical order, the medicine list and insurance cards in one folder. See power of attorney.
- Learn the comfort basics. Ask the nurse to show you how to reposition your parent, care for their mouth and skin, and give medicines.
As the illness progresses, your parent may eat and drink less, sleep more and become confused. These are often normal parts of dying, and the hospice nurse can explain what you see. Our guides to when an older parent stops eating and an older parent sleeping a lot describe these changes.
How to choose a hospice
- Ask for names. Your parent's doctor, the hospital discharge planner or friends who have used hospice can suggest providers.
- Check quality. Care Compare shows hospice quality measures and family survey results5.
- Ask key questions. How quickly can care start? How often will the nurse visit? Who answers the phone at night, and how fast does a nurse come? Do you offer continuous care and inpatient care?
- Ask about special needs. For a parent with dementia, ask about dementia experience, and see hospice for dementia. See sundowning.
- Know you can change. Your parent can change hospice providers once in each benefit period1.
