With hospice at home, the hospice team visits, manages symptoms, brings equipment, and answers the phone at night. Between visits, the family provides most of the hands-on care: turning, bathing, feeding, giving the medications the hospice has ordered, and sitting up through the night. Plan those hours before the last weeks.
This guide is for families who have started hospice at home or expect to soon.
What the hospice team usually does
A hospice team typically includes a nurse, an aide, a social worker, a chaplain, the hospice physician, and trained volunteers. Together they:
Visit on a schedule and when symptoms change
Manage pain, breathlessness, anxiety, and other symptoms
Order medications and equipment related to the illness, such as a hospital bed
Teach the family how to give medications and care for the person
Answer calls at any hour and send a nurse when needed
Support the family through the death and afterward
Ask the hospice to describe its own visit schedule and after-hours process. Programs differ.
What usually stays with the family
Being in the house, day and night, as the person needs more help
Personal care between aide visits
Giving scheduled medications and comfort medications as the hospice instructs
Noticing changes and calling the hospice
Meals, laundry, the household, and visitors
Rest for the person doing most of the caregiving
OPA’s free System Maps include an end-of-life map that shows where each organization’s role stops and what lands on the family. The Residual Outcome Worksheet records, for each organization, its responsibility, the outcome that still remains, and who owns that outcome.
Plan the hours before you need them
Sit down with the hospice social worker early and map a full day and a full night. Mark which hours have a hospice visit, which hours a family member can cover, and which hours nobody can. Then decide how to fill the empty ones: a rotation of relatives, friends from church or the neighborhood, hospice volunteers, or paid caregivers.
Plan the nights as carefully as the days, including who sleeps and when.
Paperwork to have ready
Keep the health care directive, any physician orders about resuscitation, and the hospice’s phone number together and easy to find. Make sure every family member and caregiver knows to call the hospice first, not 911, when the person’s condition changes, unless the hospice has told you otherwise. The Goals of Care worksheet helps a family talk through wishes, and OPA’s guide to legal papers explains who can speak for the person.
A first step this week
Draw a 24-hour clock for one day. Shade the hours the hospice is there and the hours a family member has agreed to cover. Show the unshaded hours to the hospice social worker and ask how other families have filled them.
If your family needs help with personal care or overnight hours at home, see how care starts at OPA.
Hospice rules and services vary by program and change over time. Requirements and services can change. Confirm what your hospice provides with the hospice team or Medicare. This is general information, not medical or legal advice. Follow your hospice team’s instructions, and ask them first whenever the person’s condition changes.
For a reliable next step, use Medicare’s hospice care overview for the official details, then use live-in care when your family needs to organize support at home.
For a related decision, National Institute on Aging end-of-life guidance can help frame the question, and this site’s planning-ahead guide offers a practical next step.