End-of-Life Care

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Key points

Sometimes people with advanced liver disease need to start thinking about the end of their life
Planning will make things easier for you, your loved ones and your medical team
Have honest and open conversations with your doctors
Think about what’s really important to you as you get sicker
Write an advance care directive and appoint someone to make decisions for you if you can’t make them yourself
Get your affairs in order and write a will. Useful resources are below.

What is end-of-life care?

Sometimes advanced liver disease gets to the point where it’s no longer possible to cure it or improve it. At this stage, your symptoms and liver function are probably getting much worse. The most important thing is to make you comfortable and reduce your symptoms.

Your medical team will look after symptoms like ascites, infections, hepatic encephalopathy and variceal bleeding.

Who provides end-of-life care?

End-of-life care will be provided by a whole team of people.

You will probably be referred to supportive and palliative care. They are the experts in keeping you as comfortable as possible. Your GP will probably be involved.

Other people who might look after you include:

Clinical psychologist
Clinical nurse specialist or practitioner
Social worker
Pain specialist
Pastoral or spiritual carer
Bereavement counsellor
Music therapist
Art therapist
Cultural expert.

Sometimes people receive end-of-life care in hospital. This is usually done in an inpatient palliative care unit. Others might be able receive care in a hospice or at home.

What services are available for end-of-life care?

There are several services to help people at the end of their lives. These include:

Home and community-based care: health services given to you at home, plus support for things like personal care (showering/dressing), help with shopping, transport and meals.
Specialist community palliative care workers: specialists come to your house to give you pain relief and other treatments to minimise your symptoms.
Community nursing: Ongoing health care that’s given by nurses in your own home.

Talk to your medical team about accessing these services in your area.

Planning for the end of your life

Planning is important if you’re facing the end of your life. People who plan often find a sense of calm and comfort. Their loved ones also feel more reassured that know what to do.

Planning is particularly important for people with advanced liver disease. That’s because one of the complications they might develop is hepatic encephalopathy. This is a brain disorder caused by the build-up of toxins in the body. If you develop hepatic encephalopathy, it can make you very confused and sleepy, so you might not be able to make decisions for yourself.

Have open discussions

Talk frankly with your doctors about your options. Make sure you understand everything and ask questions if you don’t.

It’s important to discuss with the medical team how you want to be treated. For example, as you get sicker:

Where would you like to be at the end (at home or in a hospital or hospice)?
Would you want to receive active treatments such as antibiotics or blood transfusions or procedures to stop internal bleeding?
Do you want to continue active treatments you are receiving such as for liver cancer?
Would you want to be admitted to an intensive care unit?
Would you want to have treatments to support failing body functions, such as a breathing tube or being put on a kidney machine (dialysis)?

You don’t have to make decisions right away and you can always change your mind. But at least start thinking about these questions.

Palliative Care Australia can help you have conversations to work out what’s right for you and your loved ones. Read their Discussion Starter resources

Once you have decided what you want, consider writing an advance care directive (see below) so everyone understands.

Write an advance care directive

An advance care directive is a plan for your future care. It means you think carefully now about decisions, so everyone knows what you want if you become too ill to make decisions or communicate in future.

If you don’t have an advance care directive, doctors will make decisions based on what they think are your best interests. The outcomes might not be what you would have wanted.

How to write an advance care directive

Think about what matters to you most. Here are some questions from Advance Care Planning Australia:

What makes life worth living? For example, talking to your family
What abilities do you need to maintain to preserve your dignity? For example, toileting independently
What if you cannot recognise or understand your family?
What if you cannot eat or drink?
What if you are not able to talk to your family and friends?
What if you lost your independence and needed help to do everything?
What short and long-term goals do you have? For example, attending a birthday, going on a holiday
What treatments will help you to live the way you want?
What would be your minimum acceptable outcome? For example, feed yourself, think for yourself
How may your beliefs about religion and spirituality affect your choice of medical treatments?
Are there any medical treatments that you feel strongly about, either having or not having? This should include life-prolonging treatments.

When you’ve thought about the answers, write them down. It’s also a good idea to appoint a substitute decision-maker – someone who knows your wishes and can make decisions if you can’t do it yourself.

You can find out more about creating an advance care directive in your state or territory on the Advance Care Planning Australia website or call 1300 208 582.

NOTE: If you’re caring for someone who can’t make decisions for themselves, you might consider an advance care plan. Some states and territories have forms to help you do this. Think about where the person will receive care, where they would like to die, and what support is needed for the patient, their family and carers.

Get your affairs in order

Here are some things to think about as you approach the end of your life.

Organise power of attorney

Power of attorney is when you give someone else the legal right to look after your affairs.

There are different types of power of attorney:

General power of attorney: Someone can look after your legal and financial affairs
Enduring power of attorney: Someone can make financial and legal decisions if you can’t make decisions yourself
Medical power of attorney: Someone can make medical decisions for you if you can’t make decisions yourself.

There are different rules in each state and territory.

Write a will

A will is a legal document that sets out how you want to distribute your estate or personal assets after death. If you don’t have a will, your money might go to a close relative or to the government.

Your will can be written by a solicitor or a Public Trustee. You can also write your own will with a will kit.

If you already have a will, make sure it’s up to date.

Think about your funeral

Let your loved ones know what you want for your funeral. It will make it easier for them after you go.

You might have funeral insurance to help with the cost. If you get a Centrelink payment, you may be able to use Centrepay to help with your funeral costs.

You can also pre-pay for your funeral.

Find out more about paying for a funeral

Superannuation

Check with your superannuation fund what will happen to your super after you die. Ask about any life insurance, death and disability insurance and who will get payments for this.