Facing End of Life
Getting your affairs in order can be an important task in the final stages of life. Some issues to consider at this time include: the purpose of advance care planning, medical, legal and other practical issues.
Planning for the end of life
The process of planning for the end of life can be both rewarding and difficult. It may help you feel more in control of the situation or give you a sense of relief that the people and possessions that mean something to you will be looked after in the future. Or you may wish to ease the burden on family members or friends.
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:
- birth, marriage, divorce and citizenship certificates
- financial documents such as bank and credit card information, details of investments (e.g. shares, funds) or any safe deposit boxes
- Centrelink and Medicare details
- list of social media and other online accounts
- superannuation and insurance information
- loan details (e.g. house, car) and house title/lease documents
- document appointing a substitute decision-maker
- advance care directive
- funeral information, including any funeral insurance or any prearrangements you have made.
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 how to contact your lawyer.
If you have not already done so, 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. You need to be an adult and have capacity.
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.
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 appointments.
For some people, quality of life is more important than length, but for others, it may be the reverse. Some people may feel there’s nothing worse than death, and will do anything to avoid it. Others may prefer to die comfortably without unnecessary and sometimes uncomfortable procedures. 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, it’s not uncommon for distressed family members to have disagreements about whether to keep you alive using any means possible or focus on your quality of life. You might like to use one of Palliative Care Australia’s discussion starters or Advance Care Planning Australia’s conversation starters.
Your 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. Each state and territory has different laws about advance care directives and substitute decision-makers. To find out more, visit advancecareplanning.org.au or call 1300 208 582.
If you have not already done so, now is the time to think about making a will, appointing a substitute decision-maker and preparing an advance care directive.
For any of these documents to be legally binding, you need to have capacity at the time of signing the document. Having capacity refers to an adult’s ability to make a decision for themselves. It means you are able to understand the choices that are available and the consequences of your decisions, and are able to communicate your choices. For more information, talk to your lawyer and doctor, or visit end-of-life.qut.edu.au/capacity.
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, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding who will look after any children (guardianship).
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 help you, or contact the Public Trustee in your state or territory. For more information on preparing a will, call Cancer Council’s Legal and Financial Referral Service on 13 11 20.
If you die without a valid will, you are said to die intestate. Your assets are distributed to family members according to a formula provided by the law. Although a will can be challenged in court, a valid will usually means your assets go to the people you choose. It can also help avoid extra expenses, and simplify the process for your family.
Appointing a substitute decision-maker
You can appoint someone to make medical decisions for you if in the future you lose capacity to make these decisions yourself. This person is called a substitute decision-maker.
A substitute decision-maker should be someone you trust, who understands your values and preferences for future care and can make the decision you would have wanted. Depending on where you live, the documents for appointing this person may be known as an enduring power of attorney, enduring power of guardianship, or appointment of a medical treatment decision maker.
Managing your digital legacy
If you use social media, such as Facebook, Twitter, Instagram and LinkedIn, you may want to think about what happens to your accounts after your death.
Each social media platform has different rules for deactivating accounts, while some allow your account to be turned into a memorial page.
It is a good idea to prepare a list of all your social media accounts, passwords and instructions and leave it with someone you trust, so they can manage your ongoing digital presence according to your wishes.
If your family or friends need to delete or deactivate your account after your death, they may need to provide proof of death documentation.
Donating organs and tissue
Organ and tissue donation is possible for some people with cancer. This will depend on the cancer type and spread, and will be assessed by a doctor after the death. You need to be in a hospital to donate organs but this isn’t necessary for tissue. To record your wish to donate tissue or organs, visit donatelife.gov.au. Share your decision with family as they will be asked to give consent after your death.
Making an advance care directive
You can record your wishes for your future medical care in an advance care directive. This will only come into effect if you are unable to 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 have a different name, such as an advance health directive or advance personal plan.
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 to My Health Record, a government website that stores your health information. You can update your advance care directive when your preferences change.
What to consider when getting your affairs in order
- Have you arranged your financial affairs?
- Do you want someone to make legal or financial decisions for you if you are not able to?
- 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 beneficiary? This person must be your dependant. If it is a “lapsing” nomination, you must confirm it in writing every three years, so check when you did this last.
- If you’d like to prepare letters 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?
- Have you left instructions and passwords for your social media accounts?
- Are there certain treatments that you don’t want to have?
- 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 and appointed a substitute decision-maker?
- 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 this happens?
- Do you want a minister, priest, rabbi, imam or another spiritual practitioner present at the end?
- Do you want to be buried or cremated? Do you have a burial plot? Would you like your ashes scattered in a specific place?
- What are your preferences for a memorial service? Have you shared your wishes with family and friends?
Some people may find planning their own funeral difficult or morbid. Others may be comforted that the funeral will be carried out according to their wishes and that their family or friends won’t have to guess what they would have wanted. Still others think that funerals are for the family, and should be organised by them. Some people decide they don’t want a funeral at all, or are concerned it will be too expensive or sad. People may prefer to have a memorial service or a living wake. It’s a good idea to discuss your choice with family and friends ahead of time. A funeral or memorial service can be a comfort for family and friends.
Most people do have a funeral of some sort. It is probably not easy for most of us to hear or think about funerals. However, there can be a 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.
You might simply discuss your preferences with your family and executor. Or you may record them in writing or lodge a plan with a funeral director of your choice. There are no rules. 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.
For more information on prearranging or prepaying a funeral, talk to a funeral director or visit the Australian Funeral Directors Association website. Provide copies of a prepaid funeral contract to members of your family or file it with your will. If the funeral is not prepaid, payment may be made a few days before, or sometimes after, the service.
Knowing you will die offers you a special opportunity – the chance to say goodbye to those you love and care about. It is a sad and difficult thing to do, but some people say they feel lucky that they’ve had the time to prepare.
Saying goodbye is a personal experience and you need to 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. Other ways to say goodbye include documenting insights, requests, thanks, advice, recipes, memories or anything else that is important to you. Some people record these thoughts in a letter or recording, but you can be as creative as you like. You may also want to consider who to pass keepsakes to.
If you have children or grandchildren, you could specify 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 these actions 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. Talk to your local RSPCA to see whether they have a program for rehoming pets.
Making a memory box
A memory box is a collection of keepsakes for your family. What you put into a memory box will be your personal choice, but some possibilities include a:
- treasured photo
- video of a family event
- special birthday card
- favourite cap, tie, scarf or another item of clothing
- list of shared memories
- lock of hair
- family recipe
- pressed flower from your garden
- bottle of your favourite perfume or aftershave.
This information is reviewed by
This information was last reviewed February 2020 by the following expert content reviewers: Dr Megan Ritchie, Staff Specialist Palliative Medicine, Palliative Care Service, Concord Repatriation General Hospital, NSW; Gabrielle Asprey, Cancer Support Consultant, Cancer Council NSW; Rosemary Cavanough, Consumer; Louise Durham, Nurse Practitioner, Metro South Palliative Care Service, QLD; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Linda Nolte, Program Director, Advance Care Planning Australia, VIC; Rowena Robinson, Clinical Advisor, Palliative Care Australia, ACT; Helena Rodi, Program Manager, Advance Care Planning Australia, VIC.