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Help for carers and family with end-of-life care
End-of-life care or - palliative care, is care provided for people of all ages who have a life limiting illness with little or no prospect of cure, for whom the primary treatment goal is quality of life. This type of care uses a holistic approach – managing pain and other symptoms, whilst also addressing the physical, emotional, cultural, social and spiritual needs of the person, their family and their carers. It focuses on ‘living’ well until death.
- How do I access palliative care for my family member or friend?
- Planning care for a person with a life limiting illness
- Tips on palliative care from other carers
- More Information for carers
- Palliative care programs
- Read more
How do I access palliative care for my family member or friend?
It is best if palliative care can take place as near as possible to the person's own environment and community. The pattern of care will be different for every individual, and may depend on factors like geography, services in the area, and the needs and wishes of the person, their family members and friends.
The person you care for can be referred through your doctor or the palliative care services at your nearest hospital or hospice. There are also palliative care services available in the community if you’re caring for a family member or friend at home, although some of these may require a doctor’s referral.
Palliative care can be provided in your own home, in an aged care home if you are a resident there, in a hospital or in a hospice (more information).
Planning care for a person with a progressive life limiting illness
A good palliative care plan will:
- help to limit discomfort by reducing pain and other distressing symptoms
- inform everyone involved about what to expect
- help family members take control and make decisions about care options
- offer psychological, emotional and spiritual support
- improve and maintain the person’s quality of life, and
- provide support to families and carers through the bereavement process.
It’s important to have an advance care plan in place to make sure that your family member’s wishes about future care are taken into consideration. This will let everyone involved in the care process know what they want and don’t want. It can also help you avoid unnecessary trips to the hospital and difficult last-minute decisions about treatment when the person you care for may no longer be able to have their say.
For some people, caring for someone they love in the last stages of life can be confronting and uncomfortable. Others believe that this is simply a natural progression of their caring role. Either way, it’s not unusual for people to choose to step back at this time and consider alternatives to caring at home.
If the person you care for is already in an aged care home, you may feel they need more palliative care towards the end – perhaps at specific times of the day. If so, raise the question with the aged care home as there could be a way of purchasing additional staff hours to help out during these times.
Tips on palliative care from other carers
Being the carer of someone receiving palliative care can be distressing, but there are many others like you who have come through the process with valuable advice for those who are still facing the challenges. Here are some of their tips:
- try and be there – sometimes that’s all that’s required
- ask the doctor to let you know what you can expect over the next few hours, days or weeks – taking out some of the unknown factors can help put your fears to rest
- help the staff caring for your family member with bathing or brushing hair so you don’t feel too helpless or excluded
- use touch as a form of comfort and to express your feelings
- speak up on behalf of your family member if they appear to be in pain or discomfort
- don’t hesitate to stay overnight if you think this is required
- keep friends and family informed – some of them will want to be there at the end to offer support when you most need it
- make the room as comfortable as possible, with the patient’s special things around, and
- help make a calming atmosphere by facing the bed towards the view, playing your family member’s favourite music, drawing the blinds if the room is too bright, lighting candles or reading something meaningful out loud.
Palliative Care Australia provides a free publication titled A Journey Lived – a collection of personal stories from people who cared for a family member who was dying. You can contact them on 02 6232 4433 to receive your copy.
More information for carers
Our ‘Help with health’ section of the website has more information for carers about what to expect in the last stages of a person’s life, how much palliative care will cost, grief counselling and more.
Read more: About help for family, friends and carers
Palliative care programs
Another part of our website has lots of information for carers on community care services, palliative care equipment you can borrow and support networks specifically for carers.
Read more: About programs for end-of-life care
Read more
There is a lot of material that you can read about palliative care. One section of our website has plenty of information that you can download for free. You can also contact your Commonwealth Carer Resource Centre (more information) on 1800 242 636 for further information, or to talk to a social worker at your hospital or hospice.
Read more: About end-of-life care resources
Common questions on this topic:
- Palliative care - if Mum is in pain, can it be eased?
- Mum is in an aged care home and in the terminal stages of cancer. The home says they cannot look after her and that she has to go to hospital for treatment, but mum doesn't want to go. Can they insist?
See all common questions
