Caring for someone who is dying
As death approaches
The final weeks and days of life can bring changes that feel unfamiliar or worrying. Many of these changes are a natural part of the body slowing down. Knowing what may happen can make the experience a little less frightening and help you focus on comfort, connection and care.
General information, not medical advice. This guide is here to help you feel a little more prepared. It does not replace the guidance of the person’s health-care team, and it does not assume anything about your family, beliefs or the choices you will make.
Changes you may notice
The body slows down in its own order.
Open any card to read what the change can look like and what may help. None of these happens to everyone.
Sleeping more
The person may sleep for longer stretches and become harder to wake. They may drift between periods of wakefulness and deep sleep.
What may help
- Plan visits for times when the person is usually more awake
- Keep visits quiet and unhurried
- Limit the number of visitors when stimulation becomes tiring
- Offer gentle touch or hold their hand if that feels welcome
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Eating and drinking less
Interest in food and fluids often fades as the body slows down. This is expected. Do not pressure the person to eat or drink.
What may help
- Follow the person’s cues
- Offer small amounts when they ask for them and when swallowing is safe
- Moisten the mouth with an appropriate mouth swab or a damp cloth
- Apply lip moisturizer
- Ask the care team for guidance about mouth care and swallowing
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Changes in breathing
Breathing may become shallow, irregular or slower, with longer pauses between breaths.
What may help
- Keep the room calm
- Reposition the person if the care team has recommended it
- Use pillows for support
- Contact the care team if breathing looks uncomfortable or distressing
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Becoming less responsive
The person may respond less to voices or touch. Their eyes may stay partly open.
What may help
- Keep speaking naturally and gently
- Explain what you are doing before you provide care
- Remember that familiar voices may still be heard even when the person cannot respond
- Ask the care team about eye and mouth care
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Changes in bladder or bowel function
Urine and bowel movements may decrease. Loss of bladder or bowel control can also happen.
What may help
- Ask the care team about protective pads and skin care
- Ask whether a catheter or other support would be appropriate
- Keep the person clean, dry and comfortable
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Confusion or restlessness
The person may become confused or restless, or less aware of familiar people and surroundings.
What may help
- Speak slowly and calmly
- Offer simple reassurance
- Reduce noise, bright lights and unnecessary activity
- Avoid arguing about what the person is experiencing
- Contact the care team — discomfort, medications or other treatable causes may be contributing
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Difficulty swallowing
Swallowing food, fluids or medication may become difficult.
What may help
- Do not force food, fluid or medication
- Only offer food or drink when the person is alert enough to swallow safely
- Ask the care team how medications should be given
- Contact the care team if coughing, choking or distress occurs
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Noisy or wet-sounding breathing
Saliva and other secretions can collect as swallowing and coughing weaken. The sound can be upsetting to hear, even when it does not appear to distress the dying person.
What may help
- Reposition the person if the care team has advised it
- Keep the head slightly raised if that is comfortable
- Ask the care team whether medication or other comfort measures may help
- Do not attempt deep suctioning unless a health professional directs you to
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Moaning or other sounds
Sounds do not always mean the person is in pain. Consider them alongside facial expression, muscle tension and other signs of discomfort.
What may help
- Speak reassuringly
- Reposition the person gently
- Give any prescribed comfort medication exactly as directed
- Contact the care team if you are unsure whether symptoms are controlled
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Changes in temperature and skin colour
Hands, feet, arms and legs may feel cooler. Skin may look pale, mottled or bluish as circulation changes.
What may help
- Use light blankets for comfort
- Remove blankets if the person feels hot
- Use a fan or a cool cloth if it helps
- Do not use heating pads or other devices that could burn fragile skin
If the person seems distressed, frightened or uncomfortable at any point, contact the health-care team.
Ways to offer comfort
Small, steady things help most.
Comfort is rarely one big gesture. It is the room, the quiet, a hand to hold, and letting the person set the pace.
- A calm space
- Soft light, familiar sounds and fewer people in the room can all lower the sense of urgency. Let quiet be enough.
- Gentle presence
- Sitting close, holding a hand, reading aloud or playing music the person loves are all forms of care. You do not have to fill the silence.
- Mouth and skin comfort
- A moistened mouth, lip balm, clean bedding and careful repositioning can ease a great deal. Ask the care team to show you how.
- Follow their lead
- Offer, do not insist. If the person turns away from food, a visitor or a task, that is information. Comfort is what they will accept.
- Let the team guide the specifics
- Positioning, medication, equipment and symptom relief should be worked out with the nurse, doctor or palliative-care team. This guide is orientation, not instruction.
Emotional and spiritual changes
They may be somewhere between here and elsewhere.
Some people speak symbolically, describe journeys, talk about going home, or speak to people who are not visible to others. Strong feelings such as fear, anger, gratitude or peace may also arise. These experiences do not always need to be corrected.
Suggestions
- Listen without judgment
- Respond in the way you normally would
- Offer familiar music, stories, rituals or quiet companionship
- Ask whether the person would like spiritual, cultural or ceremonial support
- Contact the care team if the person appears frightened, distressed or suddenly confused
Saying goodbye
There is no perfect way to say goodbye.
Some people want conversation. Some want quiet company. Some seem to wait for particular people to arrive or leave. Follow the person’s cues and allow the moment to be what it is.
Gentle prompts, if words are hard to find
- I love you.
- Thank you.
- I’m sorry.
- I forgive you.
- We will look after one another.
- You can rest.
- Is there anything you want me to know?
Silence, touch, music, prayer, ceremony, laughter and simply being present can all be ways of saying goodbye.
At the time of death
What you may notice.
When a person has died, you may notice that:
- breathing stops
- there is no visible heartbeat or pulse
- there is no response to voice or touch
- the eyes stay open or closed
- the mouth relaxes
- the skin becomes pale or waxy
- the bladder or bowel releases
You do not have to do everything immediately. If the death was expected and a plan is in place, you may take time to sit with the person, contact family or friends, observe cultural or spiritual practices and say goodbye.
When a death happens at home
What to do depends on whether the death was expected.
If the death was expected and planned
Follow the plan you prepared with the health-care team. If a Notification of Expected Death in the Home form has been completed, the body may be transferred without first involving the coroner. Contact the community care or palliative-care team and your chosen funeral provider in the way your care plan sets out.
If the death was unexpected or unexplained, or there is no home-death plan
Call 911.
Also call 911 if you are not sure whether the person has died, or if you think urgent medical help may still be needed.
If you are unsure whether this is an expected death, call 911 — or follow the instructions given by the person’s health-care team.
Who to call
Keep the important numbers in one place.
Island Health Community Access Line — North Island
- Local 250-331-8570
- Toll-free 1-866-928-4988
- Hours 8:30 a.m. to 6 p.m.
Where this comes from
- Island Health — End-of-Life, Palliative Care and Hospice (opens in a new tab)
- Government of BC — Expected or planned home deaths (opens in a new tab)
- Government of BC — First steps after a death (opens in a new tab)
- Campbell River Hospice Society (opens in a new tab)
- Comox Valley Hospice Society (opens in a new tab)
- And Grace Too — local deathcare directory