What does dying from heart failure look like?
Dying from heart failure can be gradual, sudden, or a mix of both.
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.
Dying from heart failure can be gradual, sudden, or a mix of both. A person may have worsening breathlessness, swelling, tiredness, weakness, poor appetite and repeated hospital stays. Some people slowly become more frail over months. Others have a sudden severe episode, such as a rhythm problem, chest pain, fluid on the lungs or an infection that the heart can no longer cope with.
This uncertainty is one of the hardest parts of heart failure. A person may improve after treatment for a flare-up, then not return to their earlier level of strength. Over time, these dips can become closer together.
What families may notice
Breathlessness is often the main symptom. The person may be breathless when walking, washing, talking, lying flat, or eventually even at rest. They may sleep propped up on pillows or in a chair. They may wake suddenly at night short of breath.
Fluid can build up in the legs, feet, belly or lungs. Clothes and shoes may feel tighter. The person may cough more at night or feel heavy and exhausted. They may pass less urine if the kidneys are affected.
Tiredness can be severe. The person may spend much of the day resting. They may lose muscle, eat less and need help with showering, dressing and moving around. Thinking can become foggy if the brain is not getting enough oxygen or if medicines, infection or kidney problems are affecting them.
The final days or hours
Near death, the person may become very sleepy, weak and less able to take food, fluids or tablets. Breathing may become irregular. There may be noisy breathing, pauses, or a pattern of deeper and shallower breaths.
Some people with heart failure die suddenly. Others have a final decline over days, often with increasing sleepiness, breathlessness, cool hands and feet, and less urine. A person with an implantable cardioverter defibrillator may need the shock function turned off when the goal is comfort, so it does not deliver shocks during dying. Ask the cardiology or palliative care team if this applies.
What care can help
Heart failure care may still include medicines that reduce fluid and ease breathlessness. The team may review medicines that no longer help comfort or that have become hard to swallow. Oxygen, a fan, positioning, calm breathing support and carefully chosen medicines can help some people feel less short of breath.
Palliative care can work with the GP, cardiologist, heart failure nurse and community nurses. It does not mean that all heart medicines must stop. It means the plan is shaped around the person's goals, symptoms and likely benefit from each treatment.
Ask the treating team:
- What symptoms should we expect if the heart failure worsens?
- What should we do if breathlessness gets worse at night?
- Which medicines are for comfort, and which can be stopped if swallowing becomes hard?
- Is there a resuscitation plan, advance care directive or emergency plan?
When to get help now
Call 000 if the person has severe or worsening chest pain, chest pressure, pain spreading to the arm or jaw, severe trouble breathing, collapse, or a life-threatening emergency, unless the treating team has given a clear expected-death plan that says otherwise.
Contact the palliative care team, GP, heart failure nurse or cardiologist urgently if breathlessness, swelling, confusion, fainting, distress or fluid build-up is new, worse than usual, or not settling with the person's plan.
You may also want to read
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- What is palliative sedation?
- What happens if the family disagrees about treatment at the end of life?