Palliative care is not the same as giving up. It is a team approach to comfort, symptom control and quality of life when a condition cannot be cured. Most of it happens at home, and most of the practical work falls to families.
The short version
- The specialist palliative care team leads the clinical plan.
- Home care supports comfort, routine and the family's capacity to keep going.
- Pain and symptom changes go to the palliative care team or GP, not the support worker.
- Respite and overnight support protect the person who is doing the most.
Who does what
A palliative care team usually includes a doctor, nurses, possibly an allied health professional and a coordinator. They manage pain, symptoms, medications and the plan. In Victoria, this may be a community palliative care service, a hospital-based consult team or your GP with specialist support.
Home care is different. We provide personal care, meals, cleaning, companionship, transport and respite. We follow the clinical plan. We do not change it.
Comfort is practical
- Keep the room at a comfortable temperature and the light low.
- Keep water, lip balm and a cloth within reach.
- Change position gently and regularly, following the plan.
- Use the cushions and equipment the team has provided.
- Keep the path to the bathroom clear and lit.
- Reduce noise and visitors when the person is tired.
Small comforts matter more than grand gestures. A warm washer on the face. A favourite blanket. Music from a good year. Someone sitting quietly without needing conversation.
What to say to someone who is dying
There is no perfect script. Most people fear saying the wrong thing and say nothing, which is worse. Simple and honest is enough: "I am here." "I am sorry this is happening." "Is there anything you want to talk about?"
Let the person lead. If they want to talk about dying, listen. If they want to talk about the football, talk about the football. Both are valid. Neither is denial.
Medication and symptom changes
If pain is not controlled, if breathing changes, if the person becomes restless or withdrawn, call the palliative care team or the GP. Do not wait for the next scheduled visit if something has changed.
A support worker cannot assess symptoms or adjust medication. Their role is to notice and report. Make sure the phone numbers are on the fridge and that everyone knows which number is for what.
Food at the end of life
Appetite often falls. This is part of the illness, not a failure of care. Do not force food. Offer small amounts, soft textures and fluids as the person wants them. Ask the palliative care team or a dietitian for guidance.
Families often find this the hardest part. Wanting someone to eat is love. Accepting that they cannot is also love.
Support for the family
Someone has to manage the house, the appointments, the visitors, the paperwork and their own grief. That person needs sleep, a break and someone to talk to.
Respite can be a few hours or an overnight. A social worker can help with practical arrangements and referrals. Palliative care services often include a social worker or bereavement support. Ask what is available.
Plan the practical things early
Ask the person what they want, while they can tell you. Where they want to be cared for. Who should be called. What matters to them. Write it down and tell the family. These conversations are easier before a crisis than during one.
Afterwards
Grief does not follow a timetable. Palliative care services usually offer bereavement support to families for a period after the death. Griefline and Lifeline can help. So can a GP.
If you are caring for someone and feel you cannot continue, tell the team now. There is more support available than most families realise, and asking is not a failure.
Common questions
Is palliative care only for the last days?
No. Palliative care can begin much earlier, alongside treatment, to manage symptoms and improve quality of life.
Can we keep the person at home?
Often, yes, with a palliative care team and practical support. Ask the team what is realistic for the level of care needed.
Can your carers give pain relief?
Only where it is in the clinical plan and the worker is trained and authorised. Pain medication is usually managed by the palliative care nurse or GP.
What if we need help overnight?
Talk to the palliative care team about what is available, and ask us about overnight support. There may be funded options through the team or My Aged Care.
Where can the family get support?
The palliative care service, your GP, Carer Gateway, Griefline and Lifeline. Ask the team's social worker what is available locally.
Sources and further reading
This guide is general information, not medical, legal or financial advice. If you are worried about your health, call your GP. In an emergency, call 000.