When to call your palliative care team, and when to call 000

The short answer: call your palliative care team first. Most problems that happen at home in the final weeks are things they can help you manage without going to hospital. Calling them is not an overreaction. It is exactly what they are there for.

Call your palliative care team

Call your palliative care team for any of these:

• Pain that feels worse than usual or is not responding to their current medication
• Breathing that has become more laboured or distressed
• A new symptom you have not seen before
• Agitation, restlessness, or confusion that has come on suddenly
• Vomiting that is not settling
• A change in their condition that is worrying you, even if you cannot describe exactly what

You do not need to be certain before you call. If something feels wrong, that is reason enough.

Many palliative care teams have an after-hours line. The number should be on your discharge paperwork or care plan. If you cannot find it, call the hospital where they were last treated and ask for the palliative care team, or call healthdirect on 1800 022 222, where a registered nurse answers 24 hours a day.

When you call, it helps to have:

• Their full name and date of birth
• A brief description of what has changed and when it started
• Their current medications, if you have the list nearby
• Your location, in case they need to arrange a visit

In the last days, some of these changes are expected

As someone gets close to dying, they usually sleep most of the time and become hard to wake, then impossible to wake. Their hands, feet and lips can change colour, and their breathing changes. If this comes on gradually and the palliative care team has told you the person is dying, it is not an emergency. Call the team, not 000.

Ask the team now what to expect, so you are not working it out for the first time at 2am. Ask too whether your state ambulance service has a palliative care plan form that tells paramedics what the person wants, and keep it with any advance care directive or other advance care planning papers, where a paramedic would see it.

Anything sudden that the team has not prepared you for is different. So is anything on the list below, or any danger to you. Call 000.

Call 000

Some situations are always emergencies. Do not call the palliative care team first. Call 000 immediately if:

• They are having a seizure
• They are choking or their airway is blocked
• There is uncontrolled bleeding
• They have had a sudden, severe fall with possible injury
• You are in danger

The one exception: if the team has given you a written plan for seizures or bleeding, follow that plan. Call 000 if you do not have one, or if it is not working.

Also call 000 straight away if they are unresponsive and you cannot wake them, or their lips or fingernails are turning blue or grey, unless the team has told you the person is dying and these changes are expected.

If you are not sure whether something is a 000 situation, it is fine to call your palliative care team first and ask. They will tell you to call 000 if that is what is needed.

If they die at home

If the death was expected, there is no need to call 000 or the police, and no need to hurry. Call the palliative care team or the GP. They will arrange for someone to confirm the death. Sit with them for as long as you want. Ring the funeral director when you are ready, whether that is in an hour or the next morning.

If the death was sudden or unexpected, or you are not sure, call 000.

If you are not yet connected with a palliative care team

If the person you are caring for does not yet have a palliative care team in place, now is the time to set that up. Having the team in place before a difficult night makes everything easier.

Read the palliative care guide, or search by location in Palliative Care Australia's National Palliative Care Service Directory at palliativecare.org.au. Our specialist finder can help too.