Practical concerns

Saturday 1 February, 2014

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On this page:  Getting your affairs in order | Organising your paperwork | Making care choices | Making a will | Appointing a substitute decision maker | Advance care directive | Planning your funeral | Organ donation | Saying goodbye

Getting your affairs in order can be an important task in the final stages of life. This page covers the medical and legal issues to consider.

  • A will is a legally binding document outlining who receives your assets after your death.
  • A substitute decision maker is someone you appoint to make decisions for you, if at some point in the future you are unable to make them for yourself.
  • An advance care directive is a legal document that details your wishes for the medical treatment you do or don’t want to have.
  • The rules that surround these documents vary from each state and territory. Check what is relevant to your local area.

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.

Most people like to get their affairs in order before they die.

Getting your affairs in order – what to consider

  • Are your financial affairs in order?
  • 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 current will?
  • If you have life insurance, is the beneficiary information up to date?
  • If you have superannuation, have you nominated a beneficiary?
  • Have you prepared a letter, gifts or heirlooms for family or friends, if you’d like to do so?
  • Are there certain treatments that you don’t want to have?
  • Have you discussed your wishes for end-of-life care with your loved ones and treating 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 these decisions in an advance care directive or appointed a substitute decision maker?
  • 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?
  • 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 or spiritual advisor 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?

Organising your paperwork

It’s helpful to have all of your paperwork up to date and in one place. This will make it easier if a family member has to help you with financial and legal matters.

Important documents to get together might include:

  • birth, marriage, divorce and citizenship certificates
  • bank and credit card information
  • investment details (e.g. shares, funds)
  • Centrelink and Medicare details
  • superannuation and insurance information
  • house title/lease documents
  • loan details (e.g. house, car, etc)
  • will
  • passport
  • funeral information

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.

Making care choices

As you approach the end of life, you may want to think about your ongoing medical care.

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 painful interventions. You may want to find a balance between what medical care can achieve and the side effects.

Making a will

A will is a binding document that records who should receive your assets (estate) after you die. A will also covers guardianship plans for your children. Many people want to make a will or update the one they have. Having a will usually makes it easier for family and friends to carry out legal and financial arrangements after you die. Without a will, these arrangements can be complicated, lengthy and expensive.

Making a will is not difficult but it’s a legal document that must be prepared and written in the right way. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory. Cancer Council has more information on preparing a will call 13 11 20.

Having capacity to sign a legal document

When you make a will, appoint a substitute decision maker or write an advance care directive, you need to be an adult and have capacity at the time of signing the document. This means you are able to understand the choices that are available, the consequences of your decisions and are able to communicate your choices. If there could be any doubt about your capacity, it’s a good idea to get a doctor’s certificate to verify this.

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. This 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 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 have different names. These can include an enduring power of attorney, enduring power of guardianship or appointment of enduring guardian.

Advance care directive

Your doctor or another health professional may recommend that you consider making an advance care directive. In some states and territories the advance care directive is referred to as an advance health directive, advance care plan or living will. This document outlines the medical treatment you do or don’t want to have.

An advance care directive can provide you, your family and carers with the opportunity to take control of decisions that affect your care, if at some point in the future you no longer have the capacity to make them yourself.

You can make the advance care directive as simple or as detailed as you like. You can also record any religious or spiritual beliefs that may affect your health care decisions. You need to be an adult and have capacity to make an advance care directive.

You can make an advance care directive in every state and territory in Australia but the responsibility of representatives can vary from state to state. Keep a copy of your advance care directive for yourself and also give copies to your GP, oncologist, substitute decision maker and solicitor. You can ask your doctor or the hospital to place the directive on your medical record.

For more information read Cancer Council’s getting your affairs in order section. Legal advice is also recommended. Call 13 11 20 to be connected with our legal referral service.

What to consider

It is a good idea to let others know of your preferences for medical care and that you have prepared an advance care directive.

This document can relieve your family or a friend from the stress of trying to guess what you’d want done.

Without written instructions, family members may feel guilty and confused. In this situation, it’s not uncommon for distressed family members to have disagreements about whether to keep you alive with any means possible or whether to focus on your quality of life.

While you may find it difficult, it is important to talk about the various aspects of your care with your family, for example, dying in comfortable surroundings, and whether you’d like to be resuscitated or put on life support.

Planning your funeral

Some people may find planning their own funeral difficult or morbid. However, 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. Others think that funerals are for the family, and should be organised by them.

You can lodge a plan with a funeral director of your choice well before it is needed. It may be difficult to do, but you can record in writing your wishes or discuss them with your family. It is probably not easy for most of us to hear or think about the reality of what is involved in funerals. However, there can be a satisfaction in leaving your mark on the occasion, and also involving your family in the planning.

There are no rules so you’re able to 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 to be read, or you may have ideas for the full service.

If you feel you need to make preparations but you can’t do the work, or prefer not to, you may like to talk to a social worker or pastoral care worker who can help you work out what you can do.

To prearrange or prepay a funeral, talk to a funeral director. You can download an online pre-planning information form from the Australian Funeral Directors Association website, It’s important to let your family know of any arrangements you have made. Copies of a pre-paid funeral contract should be provided to members of the family or filed with your will. Payment of the funeral is made once the service is conducted.

"I’m planning my funeral to have the music I want. It is the music that has been a special part of my life. I also intend to leave a tape to be played at the service – they haven’t heard the last of me. My two closest friends are going to have something to say about my life – warts and all. I hope my funeral will be a celebration of life."

Organ donation

Some people with cancer may be able to donate their organs after they’ve died. This will depend on the type and spread of the cancer. After someone dies, a doctor considers the person’s medical history. They then make a decision about whether or not some or all of the person’s organs or tissue are suitable for transplant. Each case needs to be assessed individually, as there are usually restrictions. Even if other organs and tissues can’t be used, almost all people with cancer (except those with certain blood or eye cancers) can donate part of their eyes (corneas).

To donate organs, you need to register with the Australian Organ Donor Register at Share your decision with family as they will be asked to confirm your wishes. Driver’s licences no longer include an organ donation question.

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. Dying to Know: bringing death to life by Andrew Anastasios lists many suggestions.

If you have children, you may want to write them a letter or make them a recording on a CD, DVD or a camera. You could specify that this is opened at a specific age or time in their life. You (or friends) could also create a slideshow or scrapbook of special photographs. Memory boxes can also be special keepsakes for family. You may find this hard to do but it can be helpful and comforting for children. If your children are very young, they’ll understand your words and sentiments when they’re older.

Making arrangements for the important parts of your life can help you talk about death with family and friends. It can also give you a sense of control and relief that things that mean something to you will be looked after in the future.

Reviewed by: Dr Melanie Price, Executive Director, Psycho-oncology Co-operative Research Group, Senior Research Fellow, School of Psychology, University of Sydney; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Medicine, Mercy Hospital and Calvery Mater Newcastle, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Judith Quinlivan, Consumer; Linda Wolfe, Consumer; and Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.
Updated: 01 Feb, 2014