Getting support and telling people
Being diagnosed with a life limiting illness can involve big changes to your day to day life.
After talking with your doctor about options for your health care, it may be helpful to get support to understand and process the diagnosis.
There are also support and resources to help you to have conversations about your illness with:
- your friends and family
- your work
There is no legal requirement to tell your work about your diagnosis. However, if your ability to do your job is likely to change, you should let them know.
You should also talk to your work if you're likely to have a lot of time off for:
- sick leave or
- medical appointments.
You can read more about sick and carer's leave at FairWork Australia.
If you are a carer for someone with a life limiting illness
A carer provides ongoing, unpaid support to a family member, neighbour or friend who needs help because of:
- life limiting illness
- chronic illness
- mental illness and/or
Anyone can become a carer, any time.
If you’re a carer of someone with a life limiting illness, you may be able to access a range of services and payments.
You can find information and advice for carers at Carers NSW Australia or call the Carer Line on 1800 242 636.
The Carer Line is staffed by experienced Carer Support Officers who offer emotional support and referrals and distribute carer specific resources and information to carers.
NSW Health has resources, information and initiatives to support carers on the NSW Health Carers website.
You can use the Carer Gateway website to find information and support services including practical, social and emotional help.
You may be eligible for a carer payment from the Department of Human Services
Getting emotional support
If you need support now, call Lifeline on 13 11 14. Lifeline is available 24 hours a day, 7 days a week.
Lifeline.org.au also has information on crisis support
It may be helpful to get support when you’re diagnosed with a life limiting illness.
You can talk to your GP about accessing mental health support services. Support services include:
- social workers
- online therapy.
You may be able to get some of these services for no or low cost.
Support groups can be useful to meet for discussions in a supportive environment.
For information and support see:
- Cancer Institute NSW for information and support for people with a cancer diagnosis
- Healthdirect provides information on grief and loss.
- Cancer Council NSW information on different kinds of support
Find services near to you through:
Telling family and friends
It’s up to you to decide when you are ready to tell your family and friends.
The Australian Department of Health has put together some guides to help make these conversations easier.
Make a health care plan (Advance Care Plan)
An Advance Care Plan involves deciding what type of care you would like in the future. It documents your values and preferences for healthcare and preferred health outcomes.
The plan is used as a guide for future healthcare decision making if you are unable to communicate your wishes for yourself.
An Advance Care Plan is made in discussion with your doctor, carers, and/or close family members. It can be made by others who are close to you if you are unable to make decisions.
An Advance Care Plan won’t be legally binding but it can help people to make decisions about your health and lifestyle.
You can find Advance Care Plan information in NSW Health’s Making an Advance Care Directive booklet.
Decide on different care options
Talk with your health care team, including your GP, for information on options for care.
Seek advice from your health care team, including your general practitioner (GP) for information on options for care. Your care team will talk to you about choices and preferences at the end of life. This will include if you need specialist care, what support you and your family may need and where you prefer to receive care.
People approaching and reaching the end of their life require different types and levels of care and support. Needs will change over time.
Towards the end of life, some people may need palliative care. Palliative care aims to improve the quality of life of people as they head towards the end of life, as well as that of their carers and families. It can include the prevention of, and relief from, pain and other distressing symptoms.
Palliative care addresses needs that may be physical, psychosocial or spiritual.
For more information about palliative care see:
To find specific services, see:
Making an Advance Care Directive
An Advance Care Directive is a way to say what healthcare treatments you would like to have or refuse, should you be in a position where you are seriously ill or injured and unable to make or communicate decisions about your care and treatment.
An Advance Care Directive can only be made by you as an adult with decision making capacity. If it is valid, it must be followed.
No one can override your Advance Care Directive, not even your legally appointed guardian.
An Advance Care Directive may include one or more of the following:
- the person you would like to make medical decisions for you if you are unable to make decisions
- details of what is important to you, such as your values, life goals and preferred outcomes
- the treatments and care you would like or would refuse if you have a life-threatening illness or injury.
Where to keep your Advance Care Directive
It is a good idea to leave a copy with your:
- healthcare facility
My Health Record allows you to upload your Advance Care Plan and Advance Care Directive as part of your health information so that they will be available to healthcare staff in an emergency.
Register as an organ donor
Organs and tissue donations are used to improve and lengthen the lives of people who receive them.
Organ donations can be accepted from both people who are alive or people who have died.
For information about becoming an organ donor, see the Australian Government’s DonateLife.
Get help with costs
Life limiting illness can involve paying more for medication, support, and changes to your home. Living with a life limiting illness can sometimes prevent you from working.
There is some support available that might help you to:
- pay your living costs
- pay for medicine and health care
- manage and plan costs
Help with living costs
There can be a lot of extra day to day costs when you're managing a life limiting illness. To help with this you might consider:
- getting early access to your superannuation
- access to insurance and government payments
- help with equipment and energy
Getting early access to your superannuation
To help cover your living costs, you may be able to access your super early if you meet one of the eligibility requirements:
- being in severe financial hardship
- having a terminal illness
- being temporarily or permanently incapacitated
- having less than $200 in your super fund
- meeting compassionate grounds
You'll need to contact your superannuation fund to find out how to access your super. You can also read more about accessing your super early at the Australian Taxation Office.
Electricity and equipment
To help with these costs, check if you're eligible for one of the following services:
- Essential Medical Equipment Payment from the Department of Human Services
- Life Support Energy Rebate from Service NSW
- Medical Energy Rebate from Service NSW
You might also be eligible for help with aids and equipment through EnableNSW Healthshare.
Payments from the government
You may be eligible for a payment from the Department of Human Services.
If you're a veteran, you may be eligible for an Income Support Payment from the Department of Veteran Affairs.
Access income protection or trauma cover
If you've taken out income protection or trauma cover, you may be able to access these to help cover your living costs. You'll need to contact your insurance provider to find out how to make a claim. You can also read more about income protection and trauma cover ASIC's MoneySmart.
Help with medical costs
The cost of most palliative care services are covered by the government. This means you don't have to pay for them. You can find out more about the costs of palliative care at the Department of Health.
The costs of some medical services are covered by Medicare.
When you make an appointment with a doctor, you should ask if they bulk bill. If they don’t, you can ask:
- how much the appointment costs
- how much you'll get back from Medicare.
If your GP or doctor bulk bills, it means you don't have to pay for the appointment. You can find out more about bulk billing at the Department of Human Services.
If you pay the full cost, you can make a claim for the amount Medicare covers. Your doctor can also make a claim on your behalf.
The Medicare Safety Net can also help to keep some of your medical costs down. Medicare will start paying more of your medical costs when you spend over a certain threshold.
You may be able to get some medicines cheaper or for free through the Pharmaceutical Benefits Scheme. You can read more about the Pharmaceutical Benefits Scheme at the Department of Human Services.
Help to manage your money
Write or update a will
A will is a legal document that states who should get your assets, money and property after you die.
Writing a will involves writing a document that includes:
- a list of your assets (property, shares, jewellery)
- who you would like to get your assets after you die
A will can also include information about what you want for your funeral or memorial.
A will is the only way for you to make sure your assets are distributed they way you want them to be.
Choosing your executor
An executor is named in your will and is responsible for carrying out your wishes after you die.
You can appoint one or more people to execute your will, including either:
- a person, or people, that you know (for example, your spouse, siblings, or children over the age of 18)
- a private organisation or trustee
- a solicitor
- the public trustee (NSW Trustee & Guardian)
Some things to consider when choosing someone as your executor:
- how complicated your estate will be to administer
- how much time the have to administer your estate
- if they are willing to be the executor
- if they are comfortable working with finances or legal processes
- if choosing them will cause conflict within your family
Before you appoint someone as your executor, talk to them about what’s involved, and if they want to take on the responsibility.
How complicated will your estate be to administer?
Complicated estates take more time and effort to administer.
Your estate will be complicated to administer if you:
- have a property where tenants have a legal right to live in the property after you die(eg. a life estate)
- are receiving money as a trustee of a trust
- are leaving an ongoing trust as part of your will
It might also be complicated if you:
- have a self managed superannuation fund
- have an investment property
- have assets in different countries
- have assets in more than one state
- own assets with multiple owners
- are a director of one or more companies
- have debt on an asset that is greater than the value of the asset (eg. a mortgage)
- think there could be a dispute over your estate
If you think your estate will be complicated to administer, you might consider appointing:
These organisations charge a fee to act as your executor. How much they charge will depend on the size and complexity of your estate.
Getting help from a solicitor
To make sure your will is valid, it's best to get a solicitor to help you write it.
You can write a will on your own but if there is a mistake it might not be legally valid.
If your will is not valid your estate will be distributed according to a set formula called ‘rules of intestacy’.
To contact a legal professional, you can either:
There is a cost involved if you use either of these services.
Updating or changing your will
Update your will any time there are big changes in your life.
Situations where you might want to update your will include:
- buying a house
- getting married
- separating or divorcing from your partner
- having a child
- retiring from work
- being diagnosed with a serious illness
It's also important to update your will if someone included in the will dies. This might include:
- an executor
- a beneficiary (someone listed to receive your assets)
Storing your will
Many people store their will at home. If you store your will in your home make sure:
- it's in a secure location
- your executors know where you have stored it
You can also leave your will:
- with your solicitor
- in a safe in a bank
- with NSW Trustee & Guardian
It usually costs to store your will with a lawyer, banks, or NSW Trustee & Guardian. These costs are often charged on a yearly basis, and can also involve a charge to access your documents.
If you don’t make a will
If you don't make a will or your will is not legally valid, your assets will be distributed according to a set formula called “rules of intestacy”.
This process will be different depending on:
- If you have living relatives
- If you don't have living relatives
If you don't have living relatives, it's likely that your estate will be passed on to the State.
If you have children under the age of 18
Your will can also state who you would like to look after your dependent children when you die. This person is known as a legal guardian.
If you want to include a legal guardian in your will:
- get legal advice
- speak with the person you want to appoint as legal guardian
Choose someone to make health decisions (Enduring Guardian)
An Enduring Guardian is someone you choose to make health and lifestyle decision for you when you’re not able to yourself. An Enduring Guardian can’t make legal or financial decisions, and they can’t override or change an Advance Care Directive.
An Enduring Guardian can make health and lifestyle decisions for you if you're no longer able to make them.
You don't have to have an Enduring Guardian, but it can be helpful to have someone to act on your behalf. If you would like one, you need to set it up when you still have the capacity to.
It's important to choose someone you trust and to talk to them about your wishes ahead of time.
Some of the decisions your Enduring Guardian could make include:
- where you live
- what services you receive (such as aged care, home care or disability services)
- what medical treatment you get
They can't override or change your Advance Care Directive (see “Make a health care plan” below) if you have one, and they can’t make decisions about your money or assets.
Choose someone to make legal decisions (Enduring Power of Attorney)
An Enduring Power of Attorney allows someone to make legal and financial decisions for you when you’re not able to yourself. An Enduring Power of Attorney doesn’t allow you to make health care decisions.
At the end of your life, you might need someone to make legal and financial decisions for you.
An Enduring Power of Attorney is a legal document that lets you appoint a person (or organisation) to make legal and financial decisions for you.
Someone with Enduring Power of Attorney can do the following activities for you:
- pay your bills
- sign legal documents
- manage your money
- manage your assets
- access your bank accounts
Enduring Power of Attorney doesn't let someone make medical or care decisions. The legal document that lets people make medical decisions is called Enduring Guardian.
Deciding who to choose
It is important to think carefully about who to appoint under an Enduring Power of Attorney, as they will be responsible for big decisions.
Choose someone that you trust and who you know can:
- understand your wishes
- manage your finances
- act in your best interests
- communicate your wishes
- keep accurate records.
The person you appoint must be at least 18 years old and have the time and ability to take on the role.
Where to store your document
Store your Enduring Power of Attorney document in a safe place so that it can be accessed when it’s needed.
You can give a copy to both:
- your solicitor
- the person you have delegated as Enduring Power of Attorney.
You can also store your Enduring Power of Attorney document and other planning ahead documents in NSW Trustee and Guardian’s Will Safe.
There is a fee for storing your documents with Will Safe.
If you have property in NSW
If you want the person that you’ve delegated Power of Attorney to deal with your property, you will need to register your Enduring Power of Attorney document with NSW Land Registry Services.
This includes if you want them to be able to:
- sell your property
- mortgage your property
- lease your property