Practical concerns

Sunday 1 January, 2017

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On this page: Planning for the end of life | Organising your paperwork | Advance care planning | Preparing legal documents | Planning your funeral | Saying goodbye


Getting your affairs in order can be an important task in the final stages of life. This section explains the purpose of advance care planning, and discusses medical, legal and other practical issues to consider at this time.

Planning for the end of life

Planning for the end of life can be both rewarding and difficult. For many people, preparing for death helps them feel more in control of their situation. Some may wish to ease the burden on family members or friends. Making arrangements can also give you a sense of relief that the people, possessions and causes that mean something to you will be looked after in the future.

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:

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

Getting your affairs in order – what to consider
Financial/legal matters Relationships
  • 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 to find important papers?
  • 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? If it is a ‘lapsing’ nomination, you must confirm it in writing every three years, so check when you did this last.
Relationships
  • Have you prepared letters for family or friends, if you’d like to do so?
  • Who would you like to have around you as you get closer to death? 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?
Medical care
  • 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 end-of-life care if you’re not able to make them yourself?
  • Have you recorded your wishes for future medical care in an advance care directive or appointed a substitute decision-maker?
Spiritual issues
  • Are there any cultural, spiritual or religious practices that you would like carried out before or at the time of your death, or once you have died? Who do you need to ask to make sure this happens?
  • Do you want a minister, priest, rabbi, imam or another spiritual adviser 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 particular place?
  • What are your preferences for a memorial service? Have you shared your wishes?
"I feel like I have a window of time to get my house in order. I want my transition to be easy for my family." – Pat

Advance care planning

If you have not already done so, it is important to think about your wishes for your future medical care, and to discuss these 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 stage, whether you are healthy or ill.

As it is hard to know what medical care you’re going to want until the situation arises, uncertainty is common. Many people find their attitudes and preferences for medical care change as they get closer to death, and they need to revisit their decision regularly. To help you decide, think about what is important to you and talk with your health professionals, over several appointments if necessary.

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, while others prefer to die comfortably without unnecessary and sometimes uncomfortable interventions. You may want to find a balance between what medical care can achieve and the side effects of treatments.

Discussing these issues with the people around you will help them understand your goals, values and beliefs, and help to ensure that your wishes 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. Palliative Care Australia have developed a discussion starter that can help you reflect on your preferences for care and talk about them to your family.

As part of your advance care planning, you may appoint a substitute decision-maker and record your wishes in an advance care plan and/or advance care directive. See below for more information about these documents.

To find out more, see

The law at end of life is complex and can be confusing. The Australian Centre for Health Law Research has prepared the End of Life Law in Australia website. This website provides detailed information about Australian laws relating to death, dying and end-of-life decision-making. Visit end-of-life.qut.edu.au to find out more.

Preparing legal documents

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. Capacity includes the ability to understand the choices that are available and the consequences of your decisions, and the ability to communicate your choices. If there could be any doubt about your capacity, talk to both your lawyer and your doctor about this.

Making a will

A will is a legal document that records who you would like to receive your assets (estate) after you die. A will may also record your wishes regarding guardianship of your children.

Many people want to make a will or update the one they have as their circumstances change. Making a will is not difficult but it needs to be prepared and written in the right way to be legally valid. 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, visit your local Cancer Council website or call 13 11 20.

When you die without a valid will, you are said to die intestate. This can make matters complicated, lengthy and expensive. A court appoints an administrator to arrange your funeral and then distribute your assets to family members according to a formula. If there are no eligible relatives, your assets go to the state.

Although any will can be challenged in court, having a valid will usually means your assets will go to the people of your choice, avoids extra expenses, and simplifies the process for your family.

Appointing a substitute decision-maker

You can appoint someone to make decisions for you if at some point in the future you’re not able to make them yourself. These can include decisions about your finances, property, medical care and lifestyle. This person, called a substitute decision-maker, should be someone you trust, who will listen to and understand your values and wishes for future care. Depending on which state or territory you live in, the documents used to appoint a substitute decision-maker may be known as an enduring power of attorney, enduring power of guardianship, or appointment of enduring guardian.

Managing your digital legacy

If you use social media, such as Facebook, Twitter and Instagram, you will need 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 leave a list of all your accounts, passwords and instructions with someone you trust, so they can manage your ongoing digital presence according to your wishes.

Palliative Care Australia has produced a Guide to a Social Media Afterlife.

Advance care directive

You can record your wishes for your future medical care in an advance care directive, commonly known as a ‘living will’. This 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 a health direction, advance personal plan, advance health directive, or refusal of treatment certificate.

Keep a copy of your advance care directive for yourself and also give copies to your GP, oncologist, substitute decision-maker and solicitor. Ask your doctor or the hospital to place the directive on your medical record. You can also upload a digital version to My Health Record, a government website that stores your health information – find out more at myhealthrecord.gov.au.

For more information, visit your local Cancer Council website and read the Getting your affairs in order fact sheet, or call 13 11 20 to check whether a printed version is available. Legal advice is also recommended. Cancer Council’s Legal Referral Service can connect you with a lawyer and arrange free assistance for eligible clients.

Some people with cancer may be able to donate their organs after they’ve died. This will depend on the cancer’s type and spread and will be assessed by a doctor after the death. To record your wish to donate organs, visit donatelife.gov.au. Share your decision with family as they will be asked to give consent after your death.

Planning your funeral

Some people may find planning their own funeral difficult or morbid, while others may be comforted that it 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. This is a valid choice, but one that is worth discussing with your family and friends ahead of time.

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 also involving your family in the planning. If you feel you need to make preparations but you can’t do the work, or prefer not to, talk to a social worker or spiritual care practitioner who can help you.

You might simply discuss your wishes with your family, or you can record them in writing or lodge a plan with a funeral director of your choice. There are no rules. You can personalise your funeral to meet your 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.

To prearrange or prepay a funeral, talk to a funeral director. You can find a Plan a Funeral Form on the Australian Funeral Directors Association website. Copies of a prepaid funeral contract should be provided to members of your family or filed with your will. If the funeral is not prepaid, payment is made once the service is conducted.

Saying goodbye

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 writing letters, creating a recording on CD or DVD, and passing along keepsakes. You can find a range of other suggestions in the book Dying to Know: bringing death to life by Andrew Anastasios.1

If you have children or grandchildren, you may want to write them a letter or make them a recording. You could specify that this 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, or use an online service such as itsaboutus.com.au. A memory box (see below) 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 measures can be helpful and comforting for children. If your children are very young, they’ll understand your words and sentiments when they’re older.

"When I have been up to it, my family has been filming a video of our time together, especially the special moments with my grandchild. This has been very important to me, and will be a treasured keepsake for my family." – Agnes
Leaving an ‘emotional will’

An ‘emotional will’ is a document that shares your thoughts with and shows your concern for your family and friends, and even future generations. It is not a legal document and can be presented as creatively as you wish. You might want to record insights, requests, thanks, advice, memories or anything else that is important to you. For more information, you can download the Groundswell Project’s Emotional Will and Death Checklist.

Making a memory box

A memory box is a collection of keepsakes for your family. What you put into a memory box will be personal choices, but some possibilities include a:

  • treasured photo
  • DVD 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.

Reviewed by: Kerrie Noonan, Clinical Psychologist, Palliative Care, Liverpool Hospital, and Director, The GroundSwell Project, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Ann Branford, 13 11 20 Consultant, Cancer Council SA; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; John Haberecht, Director of Learning and Development, Centre for Palliative Care Research and Education, QLD; Marjorie Hunter, Consumer; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Cecilia van Raders, PalAssist Coordinator, Cancer Council Queensland.
1. A Anastasios, Dying to know: bringing death to life, Hardie Grant Books, Melbourne, 2010.
Updated: 01 Jan, 2017