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Facing end of life


Planning for the end of life

Planning ahead

The process of planning for the end of your 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. It may also ease the burden on family members or friends. 

Organising your paperwork

Having all of your paperwork up-to-date and in one place will make it easier if someone has to help you. Important documents might include:

  • birth, marriage or divorce certificates, passport
  • bank and credit card information
  • investment details (e.g. shares, funds), any safe deposit boxes
  • list of social media and other online accounts, passwords
  • Centrelink and Medicare details
  • superannuation and insurance information
  • house title/lease documents, loan details (e.g. house, car)
  • will, document appointing a substitute decision-maker, advance care directive and funeral information.

Discuss your legal arrangements with your family, and let someone know how to contact your lawyer.

Get financial and legal support

Questions to consider when getting your affairs in order

Financial/legal matters

  • 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.


Relationships

  • 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? 


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 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?


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 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?

Advance care planning

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.

It is hard to know what medical care you’re going to want until the situation arises. Many people find their attitudes and preferences change as they get closer to death, and they may need to revisit their decisions regularly. To help you consider what care you’d like, think about what is important to you.

You may want to find a balance between what medical care can achieve and the side effects of treatments. Discussing 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. 

Preparing legal documents

It is important 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 means you are able to understand the choices that are available and the consequences of your decisions, and can communicate your preferences. For more information, talk to your doctor and 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, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding guardianship plans for 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 help you or contact the Public Trustee in your state or territory. For more information, call Cancer Council’s Legal Referral Service on 13 11 20.

When you die without a will, you are said to die intestate. Your assets are distributed to family members according to a formula provided by the law. 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 medical decisions for you if in the future you lose capacity to make these decisions yourself. This person is called a substitute decision-maker. They 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.

Making an advance care directive

A written record of your goals and instructions for future medical care is called an advance care directive. Depending on where you live, the document may also be known as an advance health directive or advance personal plan. It will only come into effect if you are unable to make decisions for yourself.

You may need the help of your doctor or family to complete the form and ensure it is signed, dated and witnessed. Generally, these documents are legally binding and should inform your doctors, family and carers if they need to make medical decisions for you. If your needs change, you can choose to revise or replace your advance care directive.

Keep a copy of your advance care directive for yourself and share copies with your GP, oncologist, substitute decision-maker and loved ones. Ask your doctor or the hospital to place your directive on your medical record. You can also save a digital version online.

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.

For more information, read Palliative Care Australia’s Guide to a Social Media Afterlife.

 

Making a funeral plan

It's probably not easy for most of us to hear or think about funerals. However, there can be satisfaction in leaving your mark on the occasion, and in involving your family in the planning.

You can personalise your funeral to suit your cultural or spiritual beliefs. You may have a few simple requests for music you want played or poems you’d like read, or you may have ideas for the full service. You can also choose not to have a funeral at all or to have a non-traditional event such as a celebration of life. There are no rules.

If you change your mind, you can alter these arrangements at any time. To prearrange or prepay a funeral, talk to a funeral director.

It’s important to let your family know of any arrangements you have made. Copies of a prepaid funeral contract should be provided to members of your family or filed with your will.

Choosing where to die

Having some control over where death occurs is often considered a key factor in dying well. Where that place might be will be different for everyone and it may change as your situation progresses.

You may consider being in a familiar environment, being surrounded by family and friends, having good symptom control, and maintaining your dignity.

It’s a good idea to find out the views and preferences of your carers and family. Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying, and they may be uncomfortable with some options.

Talking about where you would like to be cared for and planning ahead can increase the likelihood of receiving care in your place of choice. In some cases, you may feel like your choice is limited, and that your situation helps decide the setting. 

In your own home

If asked, many people say they want to die at home. This may be because they want to be around familiar surroundings and people. While this option is not for everyone, if you do want to be at home, support is available. This may vary from a few hours a week to 24-hour care. 

Even if you live alone, with planning, you can stay as long as possible in your own home. Sometimes people go into a hospice or hospital to have symptoms managed or to give their carers a break (respite), and then return home.

You can decide at any stage to change your mind about staying at home and explore other options. If you are planning to die at home, talk to your GP or palliative care team about ways of dealing with unexpected medical events. Keep a list of phone numbers handy to call if you need advice and support. 

Key points:

  • Being cared for in a familiar environment surrounded by people you know well may help you maintain emotional wellbeing.
  • Allows you to spend more time with family and friends.
  • May offer more opportunities to maximise quality of life.
  • May feel more natural and less clinical, while still giving you access to expert medical advice and symptom control.
  • Allows you a sense of control over the last part of your life.
  • Your family and friends may find comfort in providing most of your care.
  • After death, family and friends can grieve at their own pace and decide when to call the ambulance or funeral home. 

In a palliative care unit or hospice

Specialised palliative care facilities may be called palliative care units or hospices. Some hospices have rooms within a hospital.

Palliative care units focus on caring for people with a life-limiting illness and aim to maintain quality of life. They are run by health professionals who specialise in providing physical and emotional comfort to the patient, and supporting the family before and after the death.

Palliative care units and hospices are different from most hospital wards. They are usually quieter and calmer, and have a more homely environment. Many people value the relaxed surroundings, as well as the skilled staff and expert symptom management.

These facilities often provide short-term respite care as well as longer-term care. Sometimes you can go back and forth between a palliative care unit and another setting during your final weeks. 

You may choose this option if you want to relieve your family from caring for you while you are dying, although they can still be involved. This can include feeding, bathing or simply being present.

Some people and their loved ones are unsure of when to contact a palliative care unit. They may wait to call until the final days, possibly missing out on the support that a palliative care unit or hospice has to offer. Some facilities have waiting lists, so talk to your palliative care team about when would be an appropriate time to make the first contact.

Key points:

  • Offers a welcoming and comfortable physical environment.
  • Provides 24-hour care with expert pain and symptom control.
  • Focus is on quality, not length, of life.
  • Allows the patient and their family and friends to focus on being together.
  • Direct access to a team of professionals and volunteers trained to meet the needs of the dying person, and carers.
  • Carers can leave at the end of the day and get some rest.
  • Some families prefer not to live in a house where someone has died (although others find this a comfort).

In a hospital

Even when death is expected, more people approaching the end of life die in hospital than anywhere else. While some people feel more secure being near health professionals, others feel anxious about hospital care.

If you have spent a lot of time in hospital during your illness, you may want to stay on the same ward where you are familiar with staff and surroundings. You’ll need to check if this is possible. To help create a more homely environment, ask if you can bring in items from home, such as a favourite blanket or photos.

Decisions about your care may be made without your input. Hospitals sometimes provide medical interventions, such as resuscitation and intravenous lines, that may not be what you want in the final weeks or days of life. Your health care team should work with you to make sure your care plan matches your preferences.

If you are concerned, talk to the hospital staff and request that you don’t receive such interventions. You can arrange to have your wishes recorded in an advance care directive before an emergency occurs. It can also help give you control over the type of medical treatment you receive.

Key points:

  • Experienced medical and nursing staff are available at short notice to manage physical symptoms (e.g. pain, fatigue, breathlessness, delirium) and emotional needs (e.g. anxiety, agitation).
  • Able to make an organ donation.
  • Carers can leave at the end of the day and go home to get some rest. But some carers may find leaving you to go home difficult.
  • Provides 24-hour care.
  • Some families prefer not to live in a house where someone has died.

In a residential aged care facility 

A residential aged care facility is a place where people stay who need continual care and help with daily living. These facilities cater for people with a range of chronic conditions, and nurses and aged care workers can provide care 24 hours a day. Some aged care facilities also provide respite and hospice care.

Some people fear that dying in residential aged care will be unpleasant and perhaps impersonal. But dying in an aged care facility can be comforting, particularly if it has been your home for a period of time and you are familiar with the staff, who will try to make you comfortable.

If you want to die in a residential aged care facility, ensure that you have an advance care directive in place. Talk to your care providers about avoiding an unnecessary transfer to hospital at the end of life. 

Key points:

  • A less clinical environment than some hospitals.
  • Experienced staff to manage symptoms and needs.
  • May be located close to carers, family or friends.
  • Provides 24-hour care.
  • Family and friends can go home to get some rest. But some carers may find this difficult.
  • Some families prefer not to live in a house where someone has died.

 

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. 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. You may also want to make a memory box with your favourite items (including photos, clothing, recipes, etc.) and consider who to pass keepsakes to.

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.

 

Facing End of Life

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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.

Page last updated:

The information on this webpage was adapted from Facing End of Life - A guide for people dying with cancer, their families and friends (2020 edition). This webpage was last updated in September 2021. 

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