Definitions | Ageing as an LGBTQ+ Person | Needing Care | Death Planning | Grief and Bereavement | Caring for Yourself and Others | Money Matters | Resources
- Death Planning
- Legal Documents
- Advance Care Planning
- Advance Care Directive
- Power of Attorney
- Enduring Guardian
- Your Will - Your Funeral
- Celebrating your life
- Organ and Body Donation
- Planning your funeral
- Death Doulas
- Living Wake
- Digital Death
- Voluntary Assisted Dying
“Be prepared, expect that you are not going to be here for ever and take the necessary steps so that your departure is going to be as comfortable for you. And let everyone know what you want”. – David Polson
You may think of end-of-life planning in terms of wills and insurance. You might think “but I don’t have property or enough money to worry about it”. And while leaving a will and life insurance to provide for the financial stability of your loved ones is important, the end-of-life planning we talk about here is much more than the financial side. It’s about looking after you – ensuring that your wishes are respected, and that your chosen family can, when the time comes, say goodbye in a manner that you and they would want.
82% of Australians think it is important to talk to their family about how they would want to be cared for at the end of their life. Only 28% have done so. Source: Dying to Talk
There’s a lot of terms here, some of which you may be unfamiliar with. Where do you even start? There’s more information in each of the steps below, but the short answer is that the first step is called advance care planning. This simply means thinking about your wishes for your medical and end-of-life care if you’re unable to voice your wishes yourself. When you’ve worked out your decisions, you can make an advance care directive that sets out your wishes, and give it to your next of kin, medical practitioner, and lawyer, if you have one.
You might also want to appoint a power of attorney – a person with the authority to make financial and legal decisions on your behalf – and/or an enduring guardian – a person with authority to make health and lifestyle decisions on your behalf. You don’t need to do either of these things; we provide more information and links to resources to help you decide if appointing a Power of Attorney and Guardian is right for you.
It’s a good idea for everyone in our communities to make a will. A will is a legal document that states what happens to you and your assets after you die. You might think you don’t need a will? But you should still make a will to let your survivors know your wishes for any end-of-life services, what you want to happen to your body after you die, and to help tie up any loose ends, such as closing bank accounts and managing your social media accounts after you die.
Advance Care Planning
“I would sing from the roof tops to the LGBTIQ community to do an advance care plan, it will give them some authority for what they want. I felt better after doing one”. - Bernette Redwood
We can make plans for many aspects of our lives, including death. Advance care planning is a process designed to help you think about, discuss and plan for the medical treatment you would prefer if you became too ill in the future to express your wishes. We can make wills, think about funerals, even choose the music we want played at the service.
You can make plans in the eventuality that you are still alive but unable to make decisions about your own care. This is an advance care directive. You can also plan for what happens to your body after you die – your funeral and giving your loved ones a chance to say goodbye. You can also plan for what happens to your estate – a will, which is a legal document
Advance Care Directives
An advance care directive is an important result of advance care planning. An advance care directive is a written document that records your wishes concerning the medical treatment decisions you would like made, should you become unable to speak for yourself due to illness or injury.
The document may also appoint your substitute decision maker. While it is focused on medical wishes, it can also include non-medical wishes for end-of-life such as spiritual care.
Taking steps to make sure that your will, funeral plans, and advance care directive are known and easily accessible when the time comes is important.
You should leave copies:
- With the person you have asked to take care of your wishes.
- With your lawyer or solicitor if you have one.
- At home – it has been suggested you store it in the freezer, to prevent it being lost, eaten by insects etc.
- With your GP (General Practitioner) and other treating medical professionals.
- With any other support services you access, such as aged or disability supports, social workers etc.
A Will is a legal document with instructions for who you want to inherit your estate, care for your children, and be the Executor of your estate when you die.
It can be advisable to have your Will prepared by experts who are experienced in estate planning, including law, accounting, taxation, and financial planning and investments. However, Wills you write yourself, including using will toolkits, are still legally valid as long as you make your Will in writing and sign it in front of two witnesses, who then need to sign the Will as well. The witnesses can’t be beneficiaries of the Will – that is, the witnesses must be people who are not mentioned in your will as receiving anything from the Will.
Your Will is an important legal document outlining your wishes for when you die. It details:
- who you want to receive your assets.
- who you want to receive specific personal and heirloom items (sometimes called chattels in legal documents) – pets are included in this category.
- any religious, spiritual or cultural arrangements for your funeral.
- who you want as a legal guardian for any children under 18 years.
- who you choose to be your executor when you die.
- who will manage your digital assets.
Make sure you tell your loved ones where they can find a copy of your will. In the emotional upheaval that often follows someone dying, searching for a copy of your will in your home may be too difficult or overwhelming to contemplate. Put a copy of your will in a safe place where it will be protected from moisture, dust and insects, and let people know where they can easily find it if you die. Some people choose to store their will in a moisture proof bag in the freezer! You might also want to give copies of your will to trusted friends and/or family members.
ACON has partnered with Safe Will, an online service where you can start, complete and update your bespoke will at any time. There are no fees until you are ready to submit your will.
If you receive a full Centrelink Aged Pension, you can access free will preparation services through the NSW Trustee & Guardian.
Most people commonly assume that whatever you say in your will determines how your superannuation is dealt with. This is usually not the case. Superannuation must be paid by the Trustees of the Superannuation Fund in accordance with the governing Trust Deed (which must itself comply with the requirements of the Superannuation legislation.
(See more information in Money Matters)
Executor of a Will
An Executor of a will in NSW is the person or people named by a will-maker to carry out their final wishes. The Executor/s can be a trusted friend or family member, an appointed professional such as a solicitor, or a trustee company.
Probate is the name of a court order that is granted by the Supreme Court of NSW. Being granted probate confirms that:
- the will is valid.
- the executor has permission to distribute the estate according to the will.
You might not need to go through probate if the person died without owning property and only had small amounts of money to their name.
Power of Attorney
A Power of Attorney is a legal document that gives a person, or trustee organisation the legal authority to act for you to manage your assets and make financial and legal decisions on your behalf. There are two types of Power of Attorney documents:
- Enduring Power of Attorney - A legal document that allows you to appoint a person(s) to manage financial and legal decisions on your behalf and continues even if you lose the ability to make decisions for yourself.
- General Power of Attorney - A legal document that allows you to appoint a person(s) to manage financial and legal decisions on your behalf, only while you can make your own decisions. If you want the power of attorney to continue when you can no longer make decisions for yourself, you will need to make an enduring power of attorney. Otherwise, the court may appoint a power of attorney on your behalf when you can no longer make decisions for yourself. This may not be the person you would have wished to have this power.
You can make a power of attorney here.
An Enduring Guardian is a legal document that allows you to appoint someone to make health and lifestyle decisions (such as where you live) on your behalf if you become unable to, due to injury, illness, or disability.
Your Will - Your Funeral
“What a lot of people overlook is the fact that they have all this done, they put it all in writing, but they don’t tell anyone where it is”. – David Polson
Too often, people leave directions for their funeral in their Will, but the Will is not discovered until after the funeral has taken place. It’s important to speak with your chosen Executor/s before you die, to discuss your funeral plans with them or at least to let them know where your funeral plans are, so they can access them easily in the event of your death.
If you don’t appoint a trusted friend, partner, or family member to organise your funeral, your family of origin may be appointed your next of kin and given legal authority to organise the funeral on your behalf.
Many families of origin give a wonderful send-off that reflects their family members life and wishes. But we also know this sometimes doesn’t happen, and people in our communities can be misgendered or have their identity and significant relationships ignored or dismissed in death.
If your wishes aren’t clear and accessible, important elements of who you are may be ignored, this can include your identity but might extend to things like your religion, faith, or beliefs, the music, flowers and venue for the funeral, and what type of event it will be. Your chosen family may be excluded from the decision making or the service itself. This is disrespectful to your life and identity and can be deeply distressing to the people who loved you. However, it’s perfectly legal for them to do so, unless you nominate someone to handle these arrangements.
Even if you don’t wish your family of origin to be involved in the funeral or funeral planning, you might want to speak to them, so they are aware of your wishes when the time comes.
You might also wish to prepay your funeral and leave copies of your funeral plans with a trusted funeral director; payment can then be made before or sometimes immediately after the service.
Celebrating your Life
“I think it’s really important that you tell people what you want. I want lots of wine and laughter and balloons. For music, I want Beethoven’s 5th Symphony and Moonlight Sonata, Send in the Clowns, The Rose and For She’s a Jolly Good Fellow”. - Bernette Redwood
You might not want the fuss of a funeral for yourself. However, funerals can be an important step for your loved ones and chosen family to say goodbye, to show their feelings and share their memories. We are a society that is often uncomfortable with displays of grief; funerals are one of the few places where being open with our feelings of grief and loss is accepted.
Funerals can also be an occasion of great celebration. You may want to help with the planning of this celebration before you die, for your own for peace of mind. You may be passionate about the final experience people will have at your funeral. You can determine as much or as little of the detail as you wish but make sure someone knows that you have made plans, the plans are recorded, and that they are readily available to the people tasked with looking after your funeral.
Your funeral can be a celebration of your life and you can take control of this if you wish.
Organ and Body Donation
Organ donation involves removing organs and other body tissue from a donor so they can be transplanted into another person who needs them, usually because they are very sick or dying. Living organ donation is when a person donates a kidney and/or a part or liver or bone while they are still alive. Deceased organ donation can usually only take place if a person dies in hospital, so it’s important to register as an organ donor if this is something you want to do. Older people and people with chronic health conditions can still become organ donors.
If you want to be an organ donor, it’s important to register as a donor and to let your loved ones know. Even if you are registered as a donor, your family will be asked to confirm your decision; the main reason families decline donation is because they simply don’t know what their loved one wanted.
Donating your body to medical science aids in the education of medical students and medical research. It also cuts down on the costs of a funeral, as there is no burial or cremation to pay for. Your survivors can still choose to have a celebration of your life, without a body present.
If you wish to donate your body to scientific research, this is something you must specify in writing before your death – your survivors cannot opt to donate your body to science without having your wishes in writing, even if you have spoken with them about your desire to donate your body to science.
There is no central registry for body donation in Australia. If you want to donate your body to science after you die, you’ll need to directly contact a medical school with a body donation program.
Currently in NSW, the Human Tissue Act 1983 (NSW) prevents people living with HIV and other blood-borne viruses from donating their bodies to science.
You will be sent an information package in the mail that includes donor consent forms which you can complete and return to the University if you wish to go ahead. We strongly advise you to discuss your plans with your family and medical advisor, so that they can carry out your wishes in the event of your death.
You should be aware that there are certain circumstances and medical conditions which preclude the University from accepting a human body. Final acceptance depends on the condition of the body at the time of death. Next of kin or attending medical staff, when speaking to the Body Donation Coordinator, will be asked a series of questions. From this information, conditional suitability for the Program will be determined. Final suitability will be determined by blood tests once the body is at the University.
Other reasons why the University may be unable to accept your body, despite your signed donation consent form, include storage limitations, body weight, organ donation or autopsy at time of death. These and other issues are outlined in information provided with donor consent forms at time of enquiry. If the University cannot accept the body, next of kin will be notiﬁed as soon as possible so that they can make alternative funeral arrangements.
Planning your Funeral
When planning your funeral, the music you would like to be played at your farewell can be a less confronting way to start thinking about how you want your death to be commemorated and celebrated. Some of the things to consider when planning a funeral may include -
- Who should be told? Are there certain people you want to be personally informed of your death? Is there anyone you don’t want to be notified?
- Do you want notices placed in the newspaper or online? In the community and/or mainstream press?
- Where do you want the service/celebration to be held? A place of worship, a chapel at a funeral home or cemetery/crematorium, or somewhere that was special to you? If you wish to hold your farewell somewhere such as a beach, gardens, or park, it may not be possible to have the funeral service at the location, but people could gather later. Check in with your local Council.
- Are there special readings or poetry you would like at the service? You might wish to write something yourself for someone to read on your behalf.
- You might want to ask particular people who were special to you to give remembrances. On the other hand, there may be people who you want to exclude from giving eulogies.
- Do you want a burial or cremation?
- Do you want to designate someone to announce your death on social media, if you use it? (see more in Digital Death)
Other things to consider
There is no legal requirement to use a funeral director when someone dies. Many people choose to keep the body at home until the funeral, preparing them themselves. Even if the person died in hospital, a palliative care facility or an aged care facility, they can be brought back home prior to the funeral. This isn’t something everyone would be willing or able to do, but it is an option if you choose. End-of-Life Doulas and Death Care community organisations often offer Cooling Beds so that the body can be kept at home (to Australian mortuary standards) for up to three days or more. (See more in Death Doulas)
Your Goodbye, Honouring Life
The Your Goodbye website has information about planning your own funeral, including a downloadable booklet that you can use to record your wishes and relevant information such as your doctor, accountant and lawyer if applicable.
There are many occasions when in-person funerals aren’t possible, including National and State health restrictions and because people are unable to travel to a funeral. More information on honouring a life online, when in-person funerals may not be possible.
Death Doulas/End-of-Life Doulas
A Death Doula, also known as an End-of-Life Doula is a nonmedical professional trained to care for a terminally ill person’s physical, emotional, and spiritual needs during the death process. A Death Doula can also provide resources, education, and companionship.
The End-of-Life Doula Directory is an independently run Australian directory of end-of-life doulas and consultants.
Living Wakes are celebrations of life, held while a person with a terminal illness is still alive, alert, and oriented to the world. Ideally, the honouree would still be able to hold conversations, albeit brief, and may be able to sit up or move on occasion.
After a person has died, it’s common to hear people describe the things they wish they’d said to the person. A living wake gives us the opportunity to ensure nothing is left unsaid. It is an opportunity to celebrate everything that made the person’s life unique, while they are still alive.
Saying goodbye to my friend, John, at his living wake – Catherine Lambert.
What is a Living Wake? How to plan a celebration – Mel Buttigieg.
Many of us will leave a social media legacy when we die. Social media can be a chance for people who care about you to share their feelings in a safe online space, without in person interactions. It also gives loved ones who are in other cities or countries a chance to learn of your death and to connect with others.
But what happens to your social media and online content and who is responsible for it when you die? Digital death refers to how you manage your digital assets when you die. Whilst some platforms, such as Facebook, allow you to designate someone who will memorialise or remove your account after you die, other platforms or situations may not offer this, which can be a problem when for example your survivors need access to online banking records after you die.
Apple has introduced a new service, Apple Digital Legacy, which allows you to nominate up to five people to have access to your digital data after you die.
For more, see here:
One solution to this issue is to use a password manager. A password manager is a useful tool at any time. It is a centralised database of access keys such as passwords, pin numbers and credit card numbers, protected by an encrypted master password that only you have access to. You can leave a record of this password in your Will, allowing your survivors to access your accounts, banking and billing after your death.
Voluntary Assisted Dying & The Law in NSW
For many people, the thought of pain and loss of autonomy at the end-of-life can be distressing, and they may wish to examine the possibility of voluntary assisted dying. Voluntary Assisted Dying (VAD) is the term currently used in Australia to refer to assistance provided by a doctor to end a person’s life; voluntary refers to the necessity of the person making the decision to end their life, that they are making a free choice to do so. While all Australians can refuse treatment for a terminal illness, and to request pain relieving medication for suffering, currently VAD is only legal in Victoria, Tasmania, South Australia, and Western Australia.
The most recent attempt to enact VAD in NSW, the Voluntary Assisted Dying Bill 2021 passed the Legislative Assembly of the NSW Parliament in November 2021. It is expected to be voted on in the Legislative Council in 2022. More information about the Bill.