The Hospice Guide
What to Expect From Hospice Care at Home
The first visit, a typical week, how illness progresses, comfort tips for caregivers, and what happens after death.
Most hospice care happens at home, with family or other caregivers providing daily care and the hospice team visiting, training and supporting them. Here is what usually happens, from the first visit to the final days.
The first days
- Admission visit. A hospice nurse comes to the home to review medical history, current medications and symptoms, and to explain how hospice works. You will sign consent forms and the election statement.
- Plan of care. The team writes a plan based on the patient’s goals: what matters most, how to manage symptoms, and who does what.
- Equipment and supplies. A hospital bed, wheelchair, commode or oxygen can usually be delivered within a day or two.
- Medications. The hospice reviews all medications, stops ones that no longer help, and often provides a small “comfort kit” of medicines for sudden symptoms. See common hospice medications.
A typical week
- Nurse visits, often one to three times a week at first, and more as needs grow
- Hospice aide visits for bathing and personal care
- Social worker and chaplain visits, if wanted
- Volunteer visits for companionship or short breaks
- A 24/7 phone line to reach a nurse at any time, day or night
Keep the hospice phone number by the bed and on the fridge. If something changes, call hospice first instead of 911, unless the patient wants to go to the hospital. Calling 911 can lead to treatments the patient did not want.
How illness often progresses
Every person is different, but families often notice these changes over time:
- Weeks before: more sleep, less interest in food and activities, withdrawal from visitors.
- Days before: confusion or restlessness, very little eating or drinking, changes in breathing, cool hands and feet, and skin that looks blotchy or pale.
- Final hours: long pauses between breaths, noisy breathing from fluid in the throat, and less response. Hearing may continue until the end, so keep talking to them.
These changes are usually a natural part of dying, not signs of suffering. The hospice nurse can explain what you are seeing and treat any discomfort.
Comfort tips for caregivers
- Offer small sips, ice chips or mouth swabs instead of full meals. Do not force food or fluids.
- Keep lips moist with balm and the mouth clean with a soft swab.
- Reposition every few hours to prevent pressure sores; ask the aide to show you how.
- Keep the room calm, with soft light and familiar music, voices or prayers.
- Take breaks. Ask about volunteers and respite care.
Things families wish they had known
- You can ask for more visits, a different aide schedule or a different nurse.
- Hospice can arrange continuous care or inpatient care if symptoms become hard to manage at home.
- Pain medicines given in hospice are dosed for comfort. They do not hasten death when used as directed.
- Grief support continues for the family after the death, often for a year or more.
After death
When death happens at home, call the hospice, not 911. A nurse will come to confirm the death, help with the next steps, remove or dispose of medications, and contact the funeral home you choose. There is no need to rush; you can take time to sit with your loved one.
This guide is general information, not medical advice. Your hospice team is the best source of guidance for your loved one.