When should palliative care start?
Palliative care can start as soon as someone is diagnosed with a life-limiting illness, not only in the last days of life.
Palliative care can start as soon as someone is diagnosed with a life-limiting illness, not only in the last days of life. It can also start later, when symptoms, treatment decisions, care needs or family stress become harder to manage.
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.
It does not have to wait until someone is dying
Palliative care is care for people living with a life-limiting or terminal illness. Healthdirect says it can start at any time from diagnosis of a long-term illness, and can be given alongside active treatment. Palliative Care Australia says people may receive palliative care from the time they are first diagnosed with a life-limiting illness.
Starting earlier can give the person and family time to build a relationship with the team. It can also help with symptoms before they become severe, and with planning before a crisis happens.
Good times to ask about palliative care
It may be worth asking about palliative care when:
- the illness is not curable
- treatment is aimed at control rather than cure
- symptoms such as pain, breathlessness, nausea, fatigue or anxiety are affecting daily life
- hospital visits are becoming more frequent
- the person or family needs help making treatment decisions
- the person wants to talk about future care, dying, home care or advance care planning
- carers are exhausted or unsure what to do
- the person has been told they may have months or less to live
You do not need to wait for the doctor to raise it. You can ask, "Would palliative care help us now?"
What palliative care can help with
Palliative care can help with pain and other symptoms. It can also help with emotional, social, cultural, spiritual and practical needs. The team may include doctors, nurses, social workers, physiotherapists, occupational therapists, counsellors, pharmacists and trained volunteers.
Palliative care can also support family and carers. This may include teaching carers what to expect, helping with equipment, checking whether the carer is coping, and linking people with other services.
Not every person needs specialist palliative care straight away. Some palliative care can be given by a GP, specialist or community nurse. A specialist palliative care service may become more useful when symptoms or decisions are complex.
Can it start while treatment continues?
Yes. Palliative care can happen at the same time as treatment for the illness. For example, a person may still have chemotherapy, immunotherapy, dialysis, heart failure treatment, antibiotics, radiotherapy, surgery for symptom relief, or other treatment while also receiving palliative care.
The important question is the aim of each treatment. Some treatments aim to cure. Some aim to slow the illness. Some aim to relieve symptoms. Some may have more burden than benefit. Palliative care can help the person talk through these choices with the treating team.
Why earlier can be easier
When palliative care starts only in the last few days, there may be little time to plan. Earlier support can help people:
- understand what may happen next
- manage symptoms at home
- choose who should be involved in care
- think about where they would prefer to be cared for
- make an advance care plan or directive if they want one
- organise equipment and practical support
- talk with family about what matters to them
Earlier care does not lock anyone into one plan. The person can change their mind as their illness changes.
What if the person is not ready for the word "palliative"?
Some people hear "palliative care" and think it means death is about to happen. That can make the referral feel frightening.
It may help to ask the doctor what the service can do in practical terms: symptom control, home support, care planning, family support, equipment, counselling or help with difficult decisions. The person can also ask whether the service is needed now or whether the GP and usual specialist can manage things for the moment.
When to get help now
Ask for urgent medical advice if symptoms are severe, new, worsening or not controlled by the current plan.
Call 000 if someone has a life-threatening emergency, such as severe breathing distress, severe uncontrolled bleeding, a sudden collapse without an expected death plan, a major injury, or danger in the home.