Dealing with news about dying

When you first find out that you may need end of life or palliative care, you can have a wide range of emotional reactions. It may or may not have come as a surprise to you. You may feel any or all of the following:

• shocked or disbelieving
• upset or sad
• angry or annoyed
• afraid
• worried or concerned
• overwhelmed or confused.

The future may be uncertain and you may feel a sense of hopelessness or lack of control. These are normal reactions to what can be a very upsetting and unsettling time.

Everyone responds in their own way and there is no correct response to hearing this news. If you have been through an extended period of illness, you may feel some sense of relief. If the news comes as a surprise, you may feel numb and very little else.

You may accept your situation gradually, as you deal with the news and share it with your friends and family. It is important to acknowledge that you will have your own feelings. No one else can tell you how to feel or think.

You may need time alone to question things; time for silence. And you may feel the need to be around others and to talk. Recognise your different needs and take it at your own pace. Make sure the people around you understand and support your need for both social and solitary time.

Telling friends and family that you are dying

Most people want to share their news with family, friends or another close person. This can be a big step in your own coming to terms with the news. It doesn’t have to happen all at once. You don’t have to do all the talking. If the idea of breaking the news to some people is too much, think about asking someone you trust to help you with some of these conversations, to have them speak on your behalf.

People will have different reactions to your news. Some may overwhelm you with their immediate acts of generosity and support. Some may surprise you with their apparent withdrawal. Others may be upset themselves and need their own support. They might be in shock and need some time to work through what your news means to them.

Asking questions and getting answers about dying

Many questions will probably come to the surface as you begin to make sense of news about the end of life and dying. No question is too big or too small so ask any questions you have. It can be a good idea to write these questions down as they come to mind.

You may want to ask questions about your illness, including:

• What will happen to me and my body as my illness progresses?
• What does end of life and palliative care mean?
• How do I make my preferences and wishes known for my end of life care?

Answers to these sorts of questions are very personal. There is a wide range of supports available to help you, through your doctor and the palliative care team. These health professionals have a lot of information about services available to you for the various areas of your life.

Emotional, spiritual and cultural needs at the end of your life

You may have highs and lows throughout your illness. You may feel angry, upset, grumpy or irritable and may even blame others for some emotions. Sometimes you may feel positive and accepting. You may be thinking a lot about death and dying. Some of these things may be easier to talk about with someone more experienced such as a professional from the palliative care team.

Spiritual matters can become more important when you are faced with your own death. Spirituality does not have to involve religion. Spiritual care refers to any support related to questions about life’s meaning, depending on your values and beliefs. It is much broader than formal religious practices. The kind of spiritual care required will differ for every person.

If you are not religious, helpful activities about life’s meaning may include reminiscing or conducting a ‘life review with your family members or friends. This provides an opportunity to tie up loose ends, to laugh and to cry, and to tap into your spiritual side.

We all have certain values, beliefs and customs and these are usually associated with our cultural backgrounds. It is important that you let the palliative care team know about any specific cultural practices that are important for you. These may include matters of diet, personal hygiene, clothing, special national or holy days, or other important rituals.

There is further information on the page Emotional, spiritual and cultural needs.

Where to get help

• Palliative Care Advice Service
• Palliative Care Victoria Tel. (03) 9662 9644
• CareSearch
• Griefline Tel. 1300 845 745