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Facing end of life


Overview


If you have had cancer diagnosed at a late stage, or if the treatments have stopped working and remission is no longer possible, you may be told that the cancer is end stage or terminal. Everyone copes in their own way with this news. Your reaction may depend on your age, family situation, cultural background and spiritual beliefs.

Getting help and support

This may be the first time you consider end-of-life issues. Take your time. Read what seems useful now and leave the rest until you’re ready. If you or your family have any questions, call Cancer Council on 13 11 20. Ask about joining a support group or our  online discussion forum to connect with others who have a similar experience. 

You may find information about living with advanced cancer or understanding palliative care more useful at this time. The podcast, The Thing About Advanced Cancer,  provides insights to help you navigate through these challenging times.

Support services for carers and people facing end of life

Hearing the news

Learning that you may not have long to live is shocking news. Even if you are aware that the cancer has spread, hearing that you are dying can be extremely upsetting. We all know that death is a natural part of life and that it will happen to us all one day, but most of us hope that we won’t die anytime soon.

Realising that death is close can be frightening and hard to believe. For some people, it may be a relief. You may have questions right away, or you might need time to absorb the news and come to terms with the expected outcome of your disease (prognosis).

“It’s a hugely shocking thing, but we are all mortal and we all live as if we are not. And that’s one of the hardest things I think; we live as if life will go on forever and we’re so shocked when we find out that it doesn’t.” Susan

How you might feel

You will probably have many strong emotions. After the initial shock, feelings of fear, denial, anger, despair, helplessness, anxiety and depression are common. Your emotions might change, sometimes from day to day or even from hour to hour. This is part of the process of making sense of what is happening. 

How you respond to these feelings will vary. You may find it hard to think clearly. It’s natural to cry or feel completely overwhelmed, you don’t need to put on a brave face.

You may be able to work out your own ways to cope with these feelings. Find someone you can talk to, perhaps a family member or friend. You could also consider seeking professional help through a palliative care specialist or nurse, general practitioner (GP), counsellor, psychologist, psychiatrist or spiritual adviser. Other people nearing the end of life offer a unique perspective, so you may want to consider joining a support group.

Telling others

There is no easy way to start this conversation, but you may find it helps to practise what you are going to say.
  • When you feel ready, decide who to tell and what you want to say. Think of answers to possible questions, but only respond if you feel comfortable. You don’t have to share every detail.
  • Choose a quiet time and place.
  • Accept that people may react in different ways. They may be uncomfortable and not know what to say. If they get upset, you may find yourself comforting them, even though you are the one dying. Another common reaction is denial – they may be convinced that a cure will be found or that the doctors are wrong.
  • Call Cancer Council on 13 11 20 if you need support telling people. You can also ask your doctor or nurse to help you share the news. 
  • See Talking to kids about cancer for help talking to children about dying.

Do people who are dying need to be told?

Sometimes family members learn the cancer is terminal before the person who is dying. They may think the person is too young or too old to be told the truth. They may worry about the health or emotional impact if the person knows they are dying. Usually people who are dying know what is happening.

Trying to keep it a secret from them may mean they feel alone when they most need support. Ask the person if they would want to know and follow their wishes. Their health care team can help you with this conversation and also with an approach for complex situations, such as when the person dying has dementia.

Voluntary assisted dying

Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life and uses medicines specially prescribed by a health practitioner. 'Voluntary' means it is the choice of the person to end their life. Voluntary assisted dying is not part of palliative care.

As of June 2022, voluntary assisted dying laws have been passed in all six states in Australia, and are under review in the two territories. In Victoria, voluntary assisted dying is available only for people who meet all the strict conditions and follow certain steps.  Find out more and stay up-to-date.

Thinking about ending your life

Sometimes a person with cancer may decide they want their death hastened, but later change their minds. They may have thought that way because they were feeling particularly ill, scared, or worried about the strain they were putting on others.

Sometimes these feelings are due to depression or a sense of helplessness, or because pain or other symptoms are not well controlled. It is important that you talk to your doctor or nurse, and find ways to make your final days more comfortable.

If you urgently need somebody to talk to because you are thinking about ending your life or you feel distressed, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time.

 

Common questions about dying

Knowing that you have a short time to live raises many questions. Sometimes, you may not be sure if you want to know the answers. Look at the following information when you feel ready.

How long have I got?

Some people want to know how long they have left to live. Others prefer not to know. It’s a very personal decision. As everyone is different, a doctor can only give you an estimate (prognosis) based on what usually happens to people in your situation, but can’t say exactly what will happen to you.

It is likely to be very difficult if you are told that the time you have left to live will probably be short. Even if it is only a matter of weeks, having a sense of how much time might be left can give you a chance to focus on what you’d like to do.

If you live longer than the estimated time, you may feel unsettled and like you’re waiting to die, or you might feel lucky to be living beyond that time. It may help to talk about how you’re feeling with your family, the palliative care team, your doctor or a counsellor.

How does palliative care help?

Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as fully and as comfortably as possible. It’s sometimes called supportive care.

The main goal is to help you maintain your quality of life by identifying and dealing with your physical, practical, emotional, cultural, social and spiritual needs. Palliative care also offers support to families and carers.

The available palliative care services are usually tailored to your individual needs, and may include:
  • relief of pain and other symptoms
  • resources such as equipment to aid care at home
  • assistance for families to come together to talk about sensitive or complex issues
  • links to other services such as home help and financial or legal support
  • support for emotional, cultural, social and spiritual concerns
  • referrals to respite care services.

Palliative care may be coordinated by your GP or community nurse and delivered by health professionals, volunteers and carers. If you have more complex needs, your care may be led by a specialist palliative care service.

Palliative care can be provided at home, in a hospital, palliative care unit or hospice, or residential aged care facility. Services vary because palliative care is different in each state and territory.

Who will I see for my care?

Wherever you receive end-of-life care, the different health professionals in your palliative care team can offer a range of services to assist you. These can include your GP, community nurse, pharmacist, palliative care specialist, psychiatrist, dietician, occupational therapist, social worker and spiritual care practitioner, among others.

Understanding the different roles can help you work out what support is available and who to ask about particular issues.

Could complementary therapies help me?

If your doctor has told you that the cancer cannot be cured, you may wonder whether there are any other therapies you could try.

Complementary therapies tend to focus on the whole person, not just the cancer. They are used alongside conventional medical treatments, while alternative therapies are used in place of conventional treatments.

Many people use complementary therapies to help them feel better and cope with cancer and its treatment. This is also true for people who are dying with cancer. Complementary therapies may help you relax and reduce anxiety, and manage symptoms such as pain and nausea. 

Alternative therapies are often promoted as cancer cures, and family members, friends or even strangers may suggest you try them when you explain your prognosis. Unlike conventional medical treatments, alternative therapies have not been scientifically tested, so there is no proof they stop cancer growing or spreading. They can be very expensive and could interfere with other medicines.

If you are considering trying an alternative therapy, discuss this with your doctor first. Cancer Council does not recommend the use of alternative therapies as a treatment for cancer.

What does 'dying well' mean?

People often talk about wanting to have a 'good death'. What dying well means is different for each person, shaped by their attitudes, cultural background, spiritual beliefs and medical treatments.

Think about what dying well means to you. You might find it is important to:

  • know that death is coming and have some understanding of what to expect
  • have some control over pain relief and other symptoms
  • be able to retain some control over where death occurs and how it happens
  • maintain a sense of dignity
  • have the opportunity to prepare for death
  • reconcile damaged or broken relationships
  • have the chance to say goodbye
  • resolve regrets
  • honour spiritual or religious beliefs
  • be able to have a say in end-of-life care and ensure your wishes are respected
  • have your affairs in order and plans in place for friends and family.

There are different ways to die well. Some people see staying at home as the key to dying well, but others feel more supported spending their last days in a hospital or palliative care unit. It is important that your family, friends and health care team understand what matters most to you.

Open conversations and planning ahead can also help family and friends cope better with the grief and loss they may experience (bereavement). They may feel a sense of peace knowing your preferences were respected. 

What is dying going to be like?

It’s common to have fears about what the process of dying is like. Many people say they don’t fear death as much as the unknowns of dying. Having some idea of what to expect can make the process easier. Not being prepared for what might happen can be distressing for you as well as for your family and friends.

If you’ve been with a person who has died, this experience will influence how you feel about dying. It may have left you reassured, thoughtful, sad, angry or scared. You may have been disturbed by some of the physical changes that happened to the person. For example, perhaps it appeared they were having trouble breathing, or they seemed to be in pain.

It will help to talk to your doctor or to the palliative care staff. They can explain the physical process of dying and reassure you that you will be cared for. You might not be aware of physical changes because you may be drowsy or unconscious.

Ask what support your health care or palliative care team will provide for symptoms, and discuss it with your family for reassurance and support. Modern health care means that people should not die in pain or distress.

How will I know that the end is near?

For many, dying is a process that happens gradually. As the body slowly shuts down, energy levels vary and there are good days along with days when you can’t do much at all. Your appetite will reduce, and sips of water or a teaspoon of food here and there may be enough.

As death gets closer, it’s common to have little interest in talking and the outside world. You may find your attention withdraws from family and friends, and you may sleep more and more during the day. Near the end, some people may require sedation for symptom management.

Many people slip into unconsciousness before dying, although some remain alert almost until the end. Others may have periods of being awake, and then slip back into unconsciousness. No-one knows how a dying person experiences the moment of death. Whatever happens, it is thought to be a peaceful moment.

What if I feel distressed?

If you are feeling depressed or a sense of helplessness, or if you have pain, breathlessness or other symptoms that are not well controlled, you may become distressed.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to your doctor or nurse about any physical or emotional symptoms that are causing you pain or distress, and find ways to make your final days more comfortable.

If you urgently need somebody to talk to because you are very distressed or thinking about ending your life, call Lifeline on 13 11 14 for free, confidential phone counselling at any time.

 

Facing End of Life

Download our Facing End of Life booklet to learn more and find support

Download now  Order for free

 

Expert content reviewers:

Prof Jane Phillips, Head, School of Nursing and Professor, Centre for Healthcare Transformation, Queensland University of Technology and Emerita Professor Palliative Nursing, University of Technology Sydney, NSW; Prof Meera Agar, Palliative Care Physician, Professor of Palliative Medicine, University of Technology Sydney, IMPACCT, Sydney, NSW; Sandra Anderson, Consumer; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Prof Lauren Breen, Psychologist and Discipline Lead, Psychology, Curtin University, WA; David Dawes, Manager, Spiritual Care Department, Peter MacCallum Cancer Centre, VIC; Rob Ferguson, Consumer; Gabrielle Gawne-Kelnar, Counsellor, Psychotherapist and Social Worker, One Life Counselling & Psychotherapy, NSW; Justine Hatton, Senior Social Worker, Southern Adelaide Palliative Services, Flinders Medical Centre, SA; Caitlin MacDonagh, Clinical Nurse Consultant, Palliative Care, Royal North Shore Hospital, Northern Sydney Local Health District, NSW; McCabe Centre for Law and Cancer; Palliative Care Australia; Belinda Reinhold, Acting Lead Palliative Care, Cancer Council QLD; Xanthe Sansome, National Program Director, Advance Care Planning Australia; Kirsty Trebilcock, 13 11 20 Consultant, Cancer Council SA.

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 (2023 edition). This webpage was last updated in August 2023. 

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