Emotional concerns

Saturday 1 February, 2014

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On this page:  Talking about dying | The effect on people close to you | Coping with change and loss | Living with dying


Many people are not comfortable talking about the end of life. This information covers common reactions and how to cope with them.

  • Talking about death and the dying process can help support you and your family and friends through sadness, anxiety and uncertainty.
  • It’s common to feel like nobody understands what you’re going through. If you want your family and friends to acknowledge that facing the end of life is a challenge, let them know.
  • Your family and friends may react in different ways. Responses range from not wanting to leave you alone to withdrawing and not talking about the terminal nature of the cancer.
  • Telling children that the cancer diagnosis is terminal is difficult but it can help to prepare them.

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 talk about 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 sadness, anxiety and uncertainty.

Some people dying with cancer have said that the process can feel isolating and lonely. This is particularly true if family and friends avoid talking about what is happening. If you want people to acknowledge that dying from cancer is a difficult experience, let them know.

When you don’t want to talk

You may find that you don’t want to talk about dying. Or 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. If you don’t want to talk about facing the end of life, don’t force yourself.

In some cultures people think it’s disrespectful to talk about dying. Or they may feel that talking about death makes it happen sooner.

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 who are living with terminal cancer often say family and friends react in different ways when they find out the disease is at the end stage. You may experience the following responses:

  • They may be overprotective, not wanting to leave you alone.
  • They may offer to help in any way they can.
  • They may 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.
  • They may volunteer the story of a friend or celebrity who had a miraculous recovery from something everyone had deemed hopeless and fatal.
  • They may pull away and withdraw from your life.
  • Some people may start to regard you as already gone.

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.

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

Children

Telling children that you are dying is confronting and difficult. There is no easy way to approach this conversation, but it is important to let them know what is happening. While you might avoid telling them for as long as possible, children may sense that something has changed, and not sharing can add to their anxiety.

It may be helpful to have your partner or a support person with you when you have this discussion. How you tell your children will depend on their age, but these suggestions may help:

  • Be honest with them and explain the situation using words they could understand. Children may benefit from seeing a counsellor, or depending on their age, a play therapist.
  • 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.
  • For more information, call 13 11 20 or see Talking to Kids About Cancer.
If you live alone

You may live on your own and not be able to receive care from a family member or friend in your own home. If you don’t have family or don’t have contact with them, other services can help – the palliative care team or your local community health service, local council or church group. You may also need to organise practical care from support services.

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 to think ahead within a specific time period.

Finding hope

You may find it hard to feel hopeful when you’ve been told that you’re dying with cancer. While it may be unrealistic to hope for a cure, you can find hope in other things. For example, 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, and reassuring them that their pain will be well controlled.

"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

Maintaining a sense of control

For many people, learning that they are approaching the end of life may make them feel like they’ve lost control. If you want to regain control over some areas of your life, you can plan future medical decisions and tidy up unfinished business.

Losses

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.

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.

You may also gradually feel less able to do things or you may lose interest in activities you previously enjoyed. Although this process can be helpful in allowing you to get used to the idea of death, it can also make you feel sad and very low.

Living with dying

You may have heard the term ‘living with dying’ and wondered what it means. For many people, it’s the balance between knowing you are dying and still trying to live as fully as possible. This may mean focusing more on the present. You may find that some days it’s easier to achieve this than others.


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