Is what I'm seeing normal dying, or are they suffering?
Some changes that look frightening can be part of normal dying.
Some changes that look frightening can be part of normal dying. Noisy breathing, long pauses between breaths, cool hands, less urine, less interest in food and drink, sleepiness, confusion and brief restlessness can happen as the body shuts down. These signs do not always mean the person is suffering.
At the same time, suffering should never be dismissed as "normal dying" without thought. Pain, breathlessness, agitation, nausea, constipation, urinary retention, fever, fear and delirium can often be treated or eased. If you are worried, ask the care team to assess the person.
General information: This page gives general information for people in Australia. It cannot tell you exactly what is happening in one person's situation. If you have concerns about a symptom, medicine, treatment decision or change in someone's condition, contact their doctor, palliative care team, nurse or other treating health professional.
Changes that can be part of dying
When someone is close to death, their heart and circulation slow. The brain and other organs get less oxygen. The person may sleep most of the time, stop eating and drinking, pass very little urine and become less aware of the room.
Breathing often changes. It may become shallow, noisy, fast, slow or irregular. There may be long pauses where breathing seems to stop, followed by deeper breaths. Fluid or saliva can pool in the throat because the person is too weak to cough or swallow well. This can make a rattling sound. It can be upsetting to hear, but it often does not trouble the dying person.
Confusion or seeing things that others cannot see can also happen. Some people talk to people who have died, pick at sheets, reach into the air, or seem to be somewhere else. This may be delirium, a dying experience, or a mix of both. It deserves calm attention, especially if the person seems frightened or unsafe.
Signs that may suggest discomfort
A person who cannot speak may still show discomfort through their face, body and behaviour. Watch for:
- grimacing, frowning or clenched teeth
- moaning, calling out, crying or groaning
- tense arms, legs or shoulders
- pulling away when moved or touched
- fast breathing with a look of panic
- repeated attempts to get out of bed
- picking at lines, dressings or sheets
- sweating, restlessness or a sudden change in behaviour.
These signs do not prove pain, but they are reasons to ask for review. The team may check pain, breathlessness, constipation, bladder fullness, fever, medicines, mouth discomfort, positioning or anxiety.
What comfort care can include
Comfort care is still active care. It may include medicines for pain, breathlessness, nausea, agitation, noisy secretions or seizures. It can also include mouth care, eye care, skin care, clean bedding, gentle repositioning, a quiet room, cultural or spiritual support, and help for family.
Small practical actions can help. Speak in a calm voice. Tell the person what you are doing before you touch or move them. Keep noise low. Use familiar music only if it seems to settle them. Offer mouth care often. Ask the nurse how to turn or position them safely.
If they are awake and can swallow, they may enjoy small sips, ice chips or a favourite taste. If they cannot swallow safely, do not force food or drink. Mouth care can still relieve dryness.
What to ask the care team
You do not need the right medical words. You can say:
- "They look uncomfortable. Can you check them?"
- "Could this be pain or breathlessness?"
- "Could they be constipated or unable to pass urine?"
- "Are any medicines making the confusion worse?"
- "What should we do if this happens overnight?"
- "How will we know if the medicine is helping?"
Ask the team to explain what they are seeing. Sometimes a change is expected and not distressing. Sometimes it means the care plan needs to change.
When to get help now
Contact the palliative care team, GP, nurse or aged care staff urgently if the person has severe pain, severe breathlessness, repeated vomiting, choking, new agitation, a seizure, bleeding, a fall, fever with distress, or symptoms that do not settle with the current plan.
Call 000 for a life-threatening emergency if the person is not known to be dying, the change is sudden and unexpected, or you do not have a plan for what to do. If the person is expected to die at home, follow their written plan and call the palliative care service or doctor unless the plan says otherwise.
You may also want to read
- Is this person dying now, and what should I do?
- Are they suffering when breathing becomes noisy, irregular or stops for periods?
- Why are they hallucinating, picking at the sheets, trying to get out of bed or calling for dead relatives?
- They've stopped eating and drinking. Are we starving or dehydrating them?