Facing end of life

Emotional and spiritual concerns

As you approach the end of life, you may grapple with how to talk about death and dying, and how to find hope and meaning. This section offers ideas for starting conversations, and navigating emotional and spiritual concerns.

Talking about dying

Most people are not used to talking openly about death and dying, and it’s common to avoid this conversation.

Why it helps to talk

There may be days when you feel like talking about approaching the end of life, and days when you don’t. It may even change from minute to minute. In general, it can help to discuss your fears and concerns about death with trusted family and friends. When you share how you think and feel with people you trust, it can often help support all of you through the sadness, anxiety and uncertainty.

Some people dying with cancer have said that the process can feel isolating and lonely, even with a stream of visitors. This is particularly true if family and friends avoid talking about what is happening. If you are comfortable with people acknowledging that you are dying from cancer, let them know.

When you don’t want to talk

You may find that you don’t want to talk about dying, or that you want to discuss it with some people but not others. You may be the type of person who would prefer to focus on making the most of the time you have left, rather than talking about death. In some cultures, people think it’s disrespectful to talk about dying. Or they may feel that talking about death makes it happen sooner.

Everyone handles dying in their own way. If you don’t want to talk about facing the end of life, your wishes should be respected.

The effect on people close to you

You may sometimes feel that the hardest part about dying is the effect it will have on your family and friends.

People living with terminal cancer often say family and friends react in a range of ways when they find out the disease is at the end stage. Different family members and friends may:

  • offer to help in any way they can
  • be overprotective, not wanting to leave you alone
  • refuse to believe the prognosis, saying things like “I’m sure you’ll get better” or “You’ll beat this”, or suggest various forms of treatment
  • volunteer the story of a friend or celebrity who experienced a miraculous recovery from something everyone had deemed hopeless and fatal
  • pull away and withdraw from your life
  • start to regard you as already gone.

Some of these reactions can be hurtful and frustrating, but they don’t mean that your family and friends don’t care. They need time to adjust to the news and come to terms with how they’re feeling. While you may be disappointed by the reactions of some people, you may also be surprised by how much support is offered and by who offers it.

"People saying ‘You’ll get well’ makes me really cross. I know I won’t get well. I want to say, ‘I am going to die and don’t you dare deny me this business of dying.’" – Catherine
How to tell children

Telling children that you are dying will be confronting and difficult. There is no easy way to approach this conversation, but it is important to let them know what is happening. Like adults, children of all ages need time to prepare for the death of someone close to them. It’s natural to want to protect children, but children will often sense that something has changed. Not sharing the prognosis can add to their anxiety – and yours.

How you tell your children will depend on their age, but these suggestions may help:

  • It may be easier to have your partner or a support person with you when you have the initial discussion.
  • Be honest with your children and explain the situation using straightforward words, such as ‘dying’ and ‘death’. Avoid terms such as ‘passed away,’ ‘lost’, ‘went to sleep’ or ‘resting’, which can be confusing or alarming for them.
  • Keep your explanations as simple as possible, and be guided by their questions so you don’t offer more information than they may want or can handle.
  • Depending on their age, children may benefit from seeing a counsellor or play therapist.

For more information, see Talking to Kids About Cancer or call 13 11 20.

If you live alone

Many people with advanced cancer are elderly and live alone with limited support from family or friends. If you live alone and don’t have a family member or friend who can act as your carer, you can seek assistance from other sources, including:

  • the palliative care team
  • your local community health service
  • the local council
  • a church or other religious group
  • practical support services
  • Cancer Council 13 11 20.

Palliative care providers and other services can help you maintain independence for as long as possible. At some point, however, you may need 24-hour care. This is usually available in a palliative care unit (hospice), hospital or residential aged care facility.

If you want 24-hour professional care to be provided in your own home, you will usually need to pay for private nursing services, which can cost many thousands of dollars. You may feel more in control of the situation if you investigate your options ahead of time and discuss your wishes with your health care team.

Coping with change and loss

Finding a way to cope with knowing you are dying can depend on many factors, including your age, whether or not you have children, your relationships with a partner or family, and your cultural or spiritual beliefs.

Everyone will find their own way at their own pace. There is no right or wrong way. For some, learning more about the physical dying process can make it easier to cope. Others find it helps not to think too far ahead, but instead to focus on a month, a week or even a day at a time.

"If I didn’t wake up every morning hopeful, then I wouldn’t get out of bed, get dressed, eat or breathe. What’s anyone without hope?" – Holly Webber, ‘Living with death’, The Observer, Sunday 19 June 2011
Finding hope

When you’ve been told that you’re dying with cancer, you may find it hard to feel hopeful. While it may be unrealistic to hope for a cure, you can find hope in other things, such as sharing some special times with those you love. Studies of people dying with cancer show that people’s hope can be maintained when their health professionals:

  • involve them in decision-making, especially about palliative care treatment options and where they’d like to die
  • reassure them that any pain and other symptoms will be well controlled.
Maintaining a sense of control

When people learn that they are approaching the end of life, they often feel like they’ve lost control. One way to maintain some control is to make decisions about your current and future medical treatment, and to tidy up unfinished business.

Finding a balance between knowing you are dying and still trying to live as fully as possible is sometimes called ‘living with dying’. This may mean focusing more on the present. You may find that some days it’s easier to achieve this than others.

Loss and grief

Other losses and changes happen throughout a terminal illness – loss of work, loss of social roles, loss of friendships, loss of connection to community, and loss of independence. A dying person often needs to spend time grieving for these losses.

You might also experience anticipatory grief, reacting to the impending loss of your life. People often grieve for events they won’t be around for, such as marriages, graduations and having babies. People without children or a partner may mourn the lost opportunity to have these relationships or experiences.

Gradually, you may feel less able to do things or you may lose interest in activities you previously enjoyed. For many people, this is a natural part of coming to terms with death. It may make you feel sad and very low, but you may also move towards a sense of peace.

Spirituality at the end of life

Spirituality is an individual concept. For some people, it means being part of established religious beliefs and practices, such as Christianity, Judaism, Islam, Buddhism, or Indigenous belief systems. For others, spirituality is expressed as a personal philosophy or a worldview.

For many people at the end of life, spirituality is an important source of comfort and strength. Some people, however, find their beliefs are challenged by their situation. They may feel abandoned, and no longer find comfort and strength from their religion.

It may help to talk about your thoughts and feelings with a spiritual care practitioner (sometimes called a pastoral carer or chaplain). A spiritual care practitioner is part of the palliative care team and has the expertise to discuss spiritual issues, whatever your religion or even if you are atheist or agnostic. You may wish to discuss life’s meaning or your beliefs about death. A spiritual care practitioner can also provide encouragement and companionship.

People often say that knowing they’re dying makes them feel more spiritual, and they need to think about and discuss these issues. In some cases, they may embrace a belief system that they have never been interested in before or abandoned many years ago. Although many people do search for meaning at the end of their life, others are not interested in spirituality, and dying doesn’t necessarily change that.

Some people find comfort in prayer or meditation, and gain support from knowing that other people are praying for them or sending positive thoughts their way. Many religions have specific practices for when people are dying. If you want to follow certain rites in a hospital or hospice, it’s best to discuss this with the staff. They will be able to help find the space and time for you to do this, and your customs can often become part of your palliative care plan.

Expert content reviewers:

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.

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