Nothing here replaces what your hospice nurse tells you about this specific person. Call them with any change that worries you. That is what the on-call line is for.
The short version
- Sleeping more, eating and drinking less, irregular breathing, cooler hands, and restlessness are common and usually not painful to the person.
- Mouth care, a quiet room, gentle repositioning, and continuing comfort medications as directed are what help most.
- For an expected death, call the hospice nurse rather than 911.
In this guide
01
Common physical changes
- Sleeping more. The person may be awake only briefly, and conversations may be short or one-sided.
- Eating and drinking less. The body is shutting down and can no longer use food or fluid. This is expected, and it is usually not hunger or thirst in the way we experience them.
- Changes in breathing. Breathing may become irregular, with long pauses, or sound congested. The congestion is usually not painful or distressing to the person, even when it is difficult for family to hear.
- Cooler hands and feet. Circulation is shifting to the core. Skin may look mottled or bluish.
- Less urine output. Expected as intake decreases.
- Restlessness or confusion. Sometimes called terminal restlessness. It can be distressing to watch and is often treatable.
These changes do not follow a fixed schedule. Some people experience all of them over several days; others experience only a few.
02
What helps
- Keep the mouth moist with small swabs or ice chips if the person can tolerate them. Mouth care matters more than food.
- Keep the room quiet, dim, and at a comfortable temperature.
- Speak in a normal, calm voice. Hearing is often described as one of the last senses to go, and families frequently talk to the person about who is there and what is happening.
- Continue pain and symptom medications as the nurse directs. Do not stop them because the person is less responsive.
- Reposition gently and keep skin clean and dry.
- Call the hospice nurse for uncontrolled pain, agitation, or breathing that seems labored.
03
What usually does not help
Forcing food or fluids can cause choking, aspiration, or swelling, and it does not prolong life in a meaningful way at this stage. Families often feel guilty about this. The guilt is understandable and the decision to stop pushing is still the right one.
Do not call 911 for an expected death. You call the hospice nurse. If the person has a fall, an injury, or a situation that is not related to the terminal illness, call 911.
04
When death happens
If the death was expected, call the hospice nurse first. The nurse will come to confirm the death, help with the paperwork, and contact the funeral home or crematory you have chosen. You do not need to do anything else immediately.
There is no rush to move the person, and family members can take the time they need to say goodbye. If you are unsure whether a death was expected, call the hospice line and describe what happened; they will tell you what to do.
05
Being there
You do not need to say anything profound. Many families simply talk, hold a hand, play music the person loved, or sit in silence. Some people wait until family leaves the room before dying, and that is not a failure on anyone’s part.
If you cannot be there, that is not a failure either. What matters is that the person was cared for, and that you are supported afterward.
Common questions
How long does the dying process take?
It varies widely. Some people die within hours of the changes described here; others live for a week or more. No one can predict a specific time, and any provider who offers an exact number is guessing.
Should I stop giving medications?
Do not change medications on your own. Some are for comfort and remain important. The hospice nurse will tell you what to continue, what to stop, and how to give medications when someone can no longer swallow.
Is it normal to feel relief when it is over?
Yes. Relief and grief often arrive together, especially after a long illness. It does not mean you loved the person less.
Related reading
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Caregiver Exhaustion: Signs, and How to Get Help
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