End-of-life caregiving involves a combination of physical tasks, coordination with medical teams, and managing the environment for comfort and dignity. This guide covers the practical dimensions of caregiving — the things that need to be done and how to do them.
Working With Hospice
If hospice is involved (and if not, consider it — see our guide on when to consider hospice), the hospice team is your primary resource for practical caregiving questions. They provide:
- A registered nurse who visits regularly and is available by phone 24/7
- Medical equipment: hospital bed, wheelchair, bedside commode, oxygen, etc.
- Medications for symptom management, delivered to the home
- Aides for bathing and personal care (typically several times per week)
- Social worker and chaplain support
Managing Medications
- Keep an up-to-date list of all medications, doses, and schedules
- Understand what each medication is for and what symptoms it addresses
- Know what to do if a dose is missed or if symptoms break through
- Store medications safely, especially opioids
- Ask hospice about comfort kits — medications kept at home for emergency symptom management
Comfort and Physical Care
- Positioning: Reposition bedridden patients every 2 hours to prevent pressure sores. Hospice aides and nurses will teach you how.
- Mouth care: As a person stops eating and drinking, keeping the mouth moist with small swabs becomes important.
- Pain and discomfort: Watch for signs of pain (facial grimacing, moaning, restlessness) and report to the hospice nurse. Don't let pain go untreated.
- Temperature: Keep the room comfortable. Dying people often have difficulty regulating temperature.
- Environment: Quiet, comfortable, familiar. Reduce harsh lighting and loud noise. Familiar music, familiar voices.
Nutrition and Hydration
As a person approaches death, they naturally eat and drink less — this is part of the dying process, not a failure of caregiving. Forcing food or fluids near the end can cause discomfort. The hospice team will guide you on what's appropriate as the person's condition changes.
Managing Your Own Schedule
- Have a clear plan for who covers nights and who covers days
- Keep a notebook or shared document with daily observations, medications given, and questions for the next nurse visit
- Know who to call and when — have hospice numbers easily accessible
- Build in rest time for yourself, even if it's just a few hours
At the Time of Death
If the person is on hospice, call the hospice nurse first — not 911. The hospice nurse will come to pronounce the death. Only after the nurse has visited should you call the funeral home. You don't need to rush this — take the time you need.
For more, see our complete guide to caregiving and our guide to witnessing active dying.