Practical concerns

What to consider when getting your affairs in order

These questions can help you to work out the various things you need to consider or organise. Write a to-do list or use the information below as a checklist.

Financial/legal matters

• Have you made arrangements for your financial affairs?
• Do you want someone to make legal or financial decisions for you if you are not able to?
• Have you appointed a power of attorney?
• Does someone know where important papers or valuables are stored in the home or elsewhere?
• Do you have a valid will?
• If you have life insurance, is the beneficiary information up to date?
• If you have superannuation, have you nominated a binding beneficiary? This person must be your dependant. If it is a “lapsing” nomination, you must confirm it in writing every 3 years, so check when you did this last.

Relationships

• Who would you like to see before you become too unwell? Are there people you want to see or speak to? Any family or friends you want to connect with?
• If you’d like to prepare letters or video messages for family or friends, have you done so?
• Who would you like to have around you as you get closer to death? Do they know? Are there people you don’t want around?
• Are there unresolved issues that you would like to sort out with particular people? Do you need help or mediation to talk to estranged family or friends?
• Have you left the instructions and passwords for your social media accounts somewhere or given them to someone to safeguard?

Medical care

• Are there certain treatments that you don’t want to have?
• Are there outcomes of specific medical situations (e.g. life support) that you would find unacceptable?
• Have you discussed your wishes for end-of-life care with your family, carers and health professionals?
• Have you considered who can make decisions about your care if you’re not able to make them yourself?
• Have you recorded your wishes for future medical care in an advance care directive?
• Have you appointed a substitute decision-maker?

Spiritual issues

• Are there any cultural, spiritual or religious practices that you would like carried out before or after your death?
• Who do you need to ask to make sure that what you want will happen?
• Do you want a minister, priest, rabbi, imam or other spiritual practitioner present at the end?
• Do you want to be buried or cremated? Where do you want to be buried?
• Do you have a burial plot? Would you like to have your ashes scattered in a specific place?
• What are your preferences for a funeral or memorial service?
• Have you shared your wishes with family and friends?

Organising your paperwork

Having all of your paperwork up to date and in one place will make it easier if a family member has to help you with financial and legal matters. Important documents might include:

• social media logins and passwords
• birth, marriage/divorce certificates
• bank and credit card details and passwords
• investment information (e.g. shares)
• Centrelink and Medicare details
• superannuation and insurance
• house title/lease
• loan details (e.g. house, car)
• passport
• will
• documents appointing a substitute decision-maker or power of attorney
• advance care directive
• funeral information.

It’s a good idea to check or update who you have nominated as beneficiaries on your superannuation and life insurance policies. Let someone close to you know who you have nominated and how to contact your lawyer.

Managing social media

If you use social media, think about what happens to your accounts after your death (your digital legacy). Each social media platform has different rules for deactivating accounts, and some allow your account to be turned into a memorial page.

Prepare a list of your social media accounts, passwords and instructions and leave it with
someone you trust, so they can manage your ongoing digital presence in the way you want.

Facebook lets you nominate a legacy contact, who can look after your account if it is memorialised. They may need to provide proof of death documentation to delete or deactivate your account.

Advance care planning

It is important to plan for your future medical care, and to discuss your preferences and values with your family, friends and health care team. This process is called advance care planning.

Although advance care planning is often done when people are told their condition is terminal, or as they approach the end of life, it can be started at any time, whether you are healthy or ill.

Advance care planning can involve: talking and making decisions about what is important to you for quality of life; discussing what treatments you may or may not want, including where you want to receive care (e.g. in hospital or at home if possible); appointing a substitute decision-maker; and preparing legal documents, including an advance care directive.

It is hard to know what medical care you’re going to want until the situation arises. Many people find their attitudes and preferences for medical care change as they get closer to death, and they may need to revisit their decision regularly. To help you consider what care you’d like, think about what is important to you and talk with your health professionals. This may take several discussions.

For some people, quality of life is more important than length, but for others, it may be the reverse.  You may want to find a balance between what medical care can achieve and the side effects of treatments.

Discussing these issues with others will help them understand your goals, values and beliefs, and help to ensure that your preferences are respected should you lose the capacity to make your own decisions. Without these conversations, distressed family members may have disagreements about whether to keep you alive using any means possible or to focus on your quality of life.

You might like to use one of Palliative Care Australia’s discussion starters or visit the website of Advance Care Planning Australia.

Advance care documents can be as simple or as detailed as you like. As part of your advance care planning, you may appoint a substitute decision-maker and record your wishes in an advance care directive.

For more information about advance care planning, visit Advance Care Planning Australia or call them on 1300 208 582.

Preparing legal documents

If you have not already done so, now is the time to think about what legal documents you need, such as making a will, appointing a substitute decision-maker and preparing an advance care directive.

For these documents to be legally binding, you need to be an adult and have decision-making capacity at the time of making them, so complete them early if possible. In general, having capacity means you are able to understand the choices available and the consequences of your decisions, and that you can communicate these choices. Each state and territory has different laws about what having capacity means (officially), and also about making an advance care directive and about appointing a substitute decision-maker. For more information, talk to your doctor or a lawyer.

Making a will

A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate, and may include your house, land, car, money, jewellery, clothes, furniture or investments. A will can record your wishes and guardianship plans for any children.

Making a will is not difficult but it needs to be prepared and written in the right way to be legally valid. A will should be reviewed and updated as circumstances change. It is best to ask a lawyer to advise you, or contact the Public Trustee in your state or territory. Cancer Council may be able to connect you with a lawyer. For more information, call 13 11 20.

If you die without a will, you are said to die intestate. Your assets are distributed to family according to a formula provided by law. Any will can be challenged in court, but having a valid will usually means your assets go to who you want, avoids costs, and simplifies things for  family.

Appointing a substitute decision-maker

You can organise for someone to make legal, financial and/or medical decisions on your behalf if you become too unwell (lose capacity) to make these decisions yourself. This person is called a substitute decision-maker. Your substitute decision-maker should be someone you trust and who understands your values and what you want for any future care. They do not necessarily have to be a family member. Depending on your state or territory, the documents used to appoint a substitute decision-maker may be called a different name.

What happens if you don’t have a substitute decision-maker – If you cannot make decisions for yourself (lose capacity), and you do not have an advance care directive or an appointed substitute decision maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse or partner, family member or close friend. For more information about who may make treatment decisions for you, visit End of Life Law in Australia.

Making an advance care directive

You can record your wishes for your future medical care in an advance care directive – what this is called varies depending on your state or territory. This will only come into effect if you can’t make decisions for yourself. It provides a record for doctors, family and carers to consider, and may be legally binding in some states and territories. Depending on where you live, the advance care directive may be called an advance health directive, advance personal plan or similar.

Keep a copy of your advance care directive for yourself and share copies with your GP, oncologist, substitute decision-maker, family member or friend. Ask your doctor or the hospital to place your directive on your medical record. You can also save a digital version online at My Health Record, a government website that stores your key health information.  You can update your advance care directive when your preferences change.

As each state and territory has different laws about advance care directives, talk to a lawyer for specific advice about your situation. For more information, essential documents or help with advance care planning, visit Advance Care Planning Australia or call them on 1300 208 582.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor. “Voluntary” means that it is the choice of the unwell person to end their life. VAD is not part of palliative care.

VAD is only available to people who meet all the strict conditions and follow certain steps as required by the laws in their state or territory. It is essential to check the latest updates and know the law and rules around this choice in the state or territory where you live.

At the time of the last review of this information (July 2023), laws around VAD have been passed in all 6 states. However, they still may not have come into effect in your state or territory, meaning that it still may not be legal to participate in VAD. The laws in the Northern Territory and ACT were under review at the time this information was last reviewed (July 2023). For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website.

Making funeral plans

Some people may find the idea of planning their own funeral too sad or morbid. They may think that funerals are for the family, and should be organised by them. Others may feel comforted knowing that the funeral will be carried out according to their wishes and that family or friends won’t have to guess what they would have wanted. Some people may prefer to have a memorial service or a living wake, while others don’t want any kind of funeral at all, or are concerned about the cost.

It’s a good idea to discuss the type of funeral you’d like to have with family and friends ahead of time. Even if you aren’t concerned about it, a funeral or memorial service can be an important part of the grieving process and provide comfort for family and friends.

You may find satisfaction in leaving your mark on the occasion, and in involving your family in the planning. If you’d like to make preparations but you can’t do the work, or prefer not to, talk to a spiritual care practitioner, funeral celebrant or end-of-life doula for assistance, as well as any family or friends. Alternatively, you might simply discuss your preferences with your family and executor. Or you may record your wishes in writing or lodge a plan with a funeral director of your choice.

There are few rules with funeral plans. You can plan your funeral to meet any cultural or spiritual preferences. You may just have a few simple requests for music you want played or poems you’d like read, or you may have detailed plans for the full service. You can also choose to have a non-traditional event such as a celebration of life.

If you change your mind, you can alter these arrangements at any time. To prearrange or prepay a funeral, talk to a funeral director. You can download a pre-planning information form from the Australian Funeral Directors Association or National Funeral Directors Association of Australia. It’s important to let your family know of any arrangements like this that you have made and to give copies of a prepaid funeral contract to your family or file it with your will.

Saying goodbye

Knowing you will die offers you a special opportunity – the chance to say goodbye to those you love and care about. It’s sad and difficult, but some people say they feel lucky that they’ve had the time to prepare.

Saying goodbye is a personal experience, so do what is right for you. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up to it, you might have a gathering for friends and family.

If you have children or grandchildren, you could ask that any letter or recording is to be given to them at a specific age or time in their life. You (or your friends) could also create a slideshow or scrapbook of special photos. A memory box can be another special keepsake for your family. You may find it hard to think about a time when you won’t be there for your children, but leaving behind mementos can be helpful and comforting for them. If your children are very young, they’ll understand your words and sentiments when they’re older.

If you have a pet, you may want to consider who will care for them. A family member or friend may want to look after them, and you could consider leaving money in your will to cover this care. You could also look on local online pet message boards or talk to your local RSPCA to see whether they have a program for rehoming pets.

Celebrating your life

Knowing you are going to die gives you a chance to reflect on your life and all that you have  done, and to think about your legacy. You could talk with family and friends about the special times you have shared together.

You might like to share some of your belongings or a small keepsake with family members and friends as a permanent reminder. You could also write letters or stories of your life, record special memories, make a short film or video featuring you with your friends, review or arrange photo albums, document your family’s history or family tree, make a playlist of favourite songs, gather treasured recipes into a cookbook, or create artwork or music. There are also paid and voluntary services that can help you make a record of your life.

Making a memory box

A memory box is a collection of keepsakes for your family. You can put in anything that is meaningful to you, but some suggestions include a:

• treasured photo
• video of a family event
• special birthday card
• favourite cap, tie, scarf or other item of clothing
• list of shared memories
• lock of hair
• family recipe
• pressed flower from your garden
• bottle of your favourite perfume or aftershave.