Managing symptoms at home

The goal here is not to cope alone. It's to know your options clearly, so you can make the best decision for the two of you at each moment.

This guide covers the most common symptoms, what you can do at home, and when to bring in your palliative care team or seek urgent help.

Who should I call first when symptoms change at home?

Call your palliative care team first. Helping you manage symptoms at home is one of the main things they are there for.

If you're unsure about anything, call them. You don't need to wait until something feels like an emergency. A phone call to the right nurse or coordinator can often resolve something in minutes that would have meant a four-hour wait in an emergency department.

Keep their number somewhere you can find it quickly. If you don't yet have a palliative care team in place, the specialist finder can help you locate one in your area.

How is pain managed at home?

Pain is one of the most common and most treatable symptoms in palliative care. Unmanaged pain is not something you should accept as inevitable.

What you can do at home:

• Give prescribed pain medication consistently, at the scheduled times. Don't wait until pain becomes severe before giving it.
• Keep a simple log of when pain occurs, how severe it feels (1 to 10 is fine), and whether the medication helped. This helps your palliative care team adjust the approach quickly.
• Create a comfortable environment: temperature, position, lighting, and noise all make a difference to how pain feels.

When to call your palliative care team:

• Pain is not being controlled by the current medication
• A new type of pain appears, or pain changes location or character
• The person you're supporting is distressed because of pain

Your palliative care team can adjust medication, arrange a nurse visit, or organise a review. You do not need to manage persistent or uncontrolled pain at home without support.

What helps with breathlessness at home?

Breathlessness is frightening, for the person experiencing it and for the people watching. It's also something that can usually be helped.

What you can do at home:

• A fan directed at the face (not directly into the mouth) can reduce the sensation of breathlessness, even when oxygen levels are normal.
• Sitting upright or slightly forward, supported by pillows, often helps more than lying flat.
• Stay calm and present. Anxiety makes breathlessness worse. Your steadiness matters.
• Open a window if the room feels stuffy. Fresh air helps.

What to know: Breathlessness in terminal illness is not always about low oxygen levels. Sometimes the brain's perception of breathing is the issue, and this can be treated with medication. Ask your palliative care team about this if breathlessness is a regular problem.

When to call your palliative care team or seek urgent care:

• Breathlessness comes on suddenly and severely
• The person is unable to speak in full sentences
• Their lips or fingernails are turning blue or grey

What can I do about nausea at home?

Nausea can come from the illness itself, from medications, or from other causes. It is usually very manageable.

What you can do at home:

• Offer small amounts of food and drink frequently rather than full meals.
• Avoid strong smells, including cooking smells. Cold food has less odour than hot food.
• Keep the person's head slightly elevated after eating.
• Ginger (in tea, biscuits, or lollies) can help mild nausea for some people.

What to know: If nausea is related to medication, it can often be adjusted. Don't assume it has to be endured. Raise it with your palliative care team at the next opportunity, or sooner if it's severe or stopping the person from eating or drinking.

When to call:

• Vomiting that won't stop or that prevents keeping fluids down
• Nausea accompanied by new or severe pain in the abdomen
• Signs of dehydration: very dark urine, dry mouth, confusion

How do I manage anxiety at home?

Anxiety is a normal response to a situation like this. It affects the person with the diagnosis and the people caring for them. It is not a sign of weakness, and it is not something to push through.

What you can do at home:

• Acknowledge what's happening. Trying to stay relentlessly positive can increase isolation. "This is hard" is a true and complete sentence.
• Breathwork helps: slow, deliberate breathing (breathe in for four counts, out for six) activates the body's calming response.
• Reduce decisions and stimulation where you can. Simple routines, predictable days, and familiar surroundings lower anxiety.
• If the person is afraid of being alone, arrange for someone they trust to be present more often.

What to know: Anxiety can also be a symptom of physical causes like pain, breathlessness, or medication effects. If anxiety comes on suddenly or feels different from the person's usual emotional state, mention it to the palliative care team.

When to seek support:

• Anxiety is severe enough to prevent sleep or normal daily activity
• The person is having panic attacks
• There are expressions of hopelessness, loss of will to live, or talk of wanting to die sooner than their illness would cause

If this last point is relevant, speak to your palliative care team or GP. This can be a conversation, not a crisis.

What should I do when appetite reduces?

Reduced appetite is one of the most distressing things for Carers to witness, and one of the most misunderstood. As a terminal illness progresses, the body often naturally reduces its need for food. This is not starvation. The body is changing.

What you can do at home:

• Offer small amounts of whatever the person actually wants to eat. Favourite foods, comfort foods, anything they're willing to try.
• Remove any pressure around eating. Meals should not become a battleground.
• Focus on comfort and enjoyment, not nutrition targets. Ice cream is fine.
• Oral hygiene matters more when eating less. A dry mouth is uncomfortable. Small sips of water, ice chips, or mouth swabs can help.

What to know: Reduced appetite is rarely something that should be treated with intervention. Forcing nutrition when the body is winding down can cause discomfort, not benefit. Have this conversation with your palliative care team if you're unsure.

When to call:

• The person cannot swallow safely (coughing, choking, liquids coming back up)
• There is pain associated with eating or drinking
• You are concerned about hydration and want guidance

What do I do about fluid build-up?

Some terminal illnesses cause fluid to accumulate in the body. This can happen in the abdomen (called ascites) or around the lungs (called pleural effusion). Both are treatable.

What it feels like:

• Ascites: the abdomen becomes visibly swollen and feels tight or uncomfortable. The person may feel full quickly when eating, or have difficulty breathing when lying down.
• Pleural effusion: fluid around the lungs causes breathlessness, a feeling of pressure in the chest, or a dry cough.

What to know: Fluid drainage is always performed by a clinician. You cannot and should not attempt to manage this at home without medical involvement.

The good news: drainage procedures can often be done without a hospital admission. Many palliative care services offer day procedures or home visits for this. It's worth asking specifically, because the default assumption is often "hospital" when it doesn't have to be.

How to raise it: Tell your palliative care team or specialist: "I've noticed [describe the swelling or breathlessness]. Could this be fluid build-up, and what are the options for managing it?" Ask specifically whether drainage could be done outside of a hospital stay.

Which symptoms always warrant an urgent call?

Some symptoms need professional attention right away. Call your palliative care team immediately, or if they're unavailable, go to your nearest emergency department, if you notice:

• Sudden and severe pain that is not controlled by existing medication
• A significant fall, especially with head injury or suspected fracture
• Sudden confusion, disorientation, or a change in consciousness
• Severe breathlessness that does not respond to usual comfort measures
• Inability to keep any fluids down for more than a few hours
• Signs of a seizure
• A new symptom that is severe and appeared suddenly
• Any situation where you feel unsafe or unable to cope

You know this person better than anyone. If something feels wrong, that is enough reason to call.

How do I get more support at home?

Managing symptoms at home is easier with the right team behind you. If you don't yet have a palliative care team, or you want to review the specialists currently involved, the specialist finder can help you find services in your area.

If you need to talk to someone right now, your GP can also be a first point of contact for urgent symptom concerns. Palliative Care Australia (palliativecare.org.au) has a service finder to help you locate palliative care providers by postcode.

You are not expected to do this alone.

This guide is general information only. It does not replace advice from your palliative care team or treating specialists. Always involve your clinical team in decisions about symptom management.