Emotional and spiritual concerns

As you approach the end of life, you may struggle with talking about death and dying, and finding hope and meaning. Here are some ideas for starting conversations, and managing emotional and spiritual concerns.

Talking about dying

Most people are not used to talking about death and dying, and it’s common to avoid this conversation or to use different words such as “passed away”, “departed”, “gone” or “slipped away”.

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. This 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 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.

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 or alternative therapies
• 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 who offers it.

How to tell children

If you have 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.

How you tell your 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.
• Be honest with your 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 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.

Download our booklet ‘Talking to Kids About Cancer’

If you live alone

Some people with advanced cancer may live alone and have little or no support from family or friends. If you live alone, you can seek assistance from other   sources, including:

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

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

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 members, and your cultural or spiritual beliefs. It may also depend on how your family and friends cope with the news.

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

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 would like to die
• reassure them that any pain and other symptoms will be well controlled.

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.

Maintaining a sense of control

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

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 preparatory grief, which means reacting to the impending loss of your life. You may grieve for events that you won’t be around for, such as marriages, graduations and new babies in the family. 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 morning cup of coffee.

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.

For many people at the end of life, spirituality is a source of comfort and strength. Others find their beliefs are challenged by their situation and no longer find comfort in their spirituality.

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 beliefs. You may wish to discuss the meaning of life or your beliefs about death. A spiritual care practitioner can also provide companionship.

People often say that knowing they’re dying makes them feel more spiritual, and they want to think about and discuss these issues. In some cases, they may embrace a belief system that they have not been interested in before or abandoned many years ago. Although many people do look for meaning at the end of their life, others are not interested in spirituality.

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 in advance. They will be able to help you find the space and time to do this, and your customs can often become part of your palliative care plan.