Emotional and spiritual needs

There may be days (or hours) when you feel like talking about approaching the end of life, and times when you don’t. 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 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 with cancer, let them know.

You may not want to talk about dying, or want to discuss it with some people but not others. You may prefer to focus on making the most of the time you have left, rather than talking about death. Some 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 emotional support provided by partners can be vital. But partners can feel just as distressed and depressed as the person who is dying. Be open and honest about the roles you expect each other to play. Do you want a partner to be “hands on” with your care, or would you prefer that a health professional looks after you, especially in the end stages of dying? Does your partner want to care for you? Listening to what each other wants, or feels they can take on, may help you both cope better.

Some people may live alone and have little or no support from family or friends. Or they might have people who would like to help, but they live too far away for regular care.

If you live alone, you could seek assistance from:

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

Community palliative care services can help you stay at home for as long as possible. But at some point, you may need 24–hour care. This is usually available in a palliative care unit (hospice), hospital or residential aged care home.

If you prefer to die at home, you will need support from family and friends, as well as visits by your GP and other health professionals. You may consider using private nursing services, which can be expensive.

If you have young children or grandchildren, telling them that you are dying will be 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 they will often sense that something has changed. Not sharing the prognosis can add to their anxiety – and yours.

Talking openly to children about death may help them to feel more comfortable spending time with someone who is dying. Older children are likely to appreciate being trusted with the news.

How you tell children or grandchildren 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.
• Practice what you are going to say in front of a mirror beforehand.
• Be honest with children and explain the situation using straightforward words, such as “dying” and “death”. Avoid terms such as “pass away” or “going to sleep”, which can be confusing or alarming for them.
• Keep your explanations simple. Be guided by their questions so you don’t offer more information than they may want or can handle. 
• You may ask children what they know about death and what they think it means. This can help you to clear up any misconceptions about death.
• Depending on their age, children may benefit from seeing a counsellor or play therapist.

To learn more about talking to kids about the end of life, see Talking to kids about cancer.

When you’ve been told that you’re dying with cancer, you may find it hard to feel hopeful. While it may no longer be realistic 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 good palliative care can help maintain people’s hope, especially when they:

• are involved in decisions about their care
• feel reassured that any pain and other symptoms will be well controlled.

Finding a balance between knowing that 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 do this than others.

When you’re approaching the end of life, you may feel like you’ve lost control. One way to feel more in control is to make decisions about your current and future health care and medical treatment, and to share or record your preferences.

There are losses and changes that happen throughout a terminal illness – loss of work, loss of social roles, loss of friendships, loss of connection to community and loss of independence. You will probably find it helpful to spend time grieving for these losses.

You might have preparatory grief, which means feeling sad because you know loss is coming. You may grieve for events that you won’t be around for, such as holidays, marriages, graduations and new babies.

If you don’t have a partner or children, you may mourn the lost opportunity to have these relationships or experiences. You can also grieve for small pleasures such as not being able to have a coffee or go for a walk.

Gradually, you may feel less able to do things or you may lose interest in activities you used to enjoy. 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.

Living with uncertainty is the hardest thing. All our friends think ‘We might do this, we might do that in a few years’ and we don’t have that any more.

Susan

It may help to discuss your thoughts and feelings with a spiritual care practitioner (pastoral carer or chaplain). They may be part of the palliative care team and have the expertise to discuss spiritual issues, whatever your beliefs. You may wish to discuss the meaning of life or your beliefs about death. A spiritual care practitioner can also provide companionship.

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, residential aged care home or palliative care unit, it’s best to discuss this with the staff in advance. They will be able to help you do this, and your customs can often become part of your palliative care plan.