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.
Talking about dying
Most people are not used to talking about death and dying. 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. 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.
- 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.
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.
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.
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, 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.
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 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.
You may decide to donate organs and tissue after you die. This will depend on the cancer type and spread, and will be assessed by a doctor after the death. You need to be in a hospital to donate organs but this isn’t necessary for tissue. You should record your wish to donate tissue or organs and share your decision with family as they will be asked to give consent after your death.
Loss and grief
Other losses and changes happen throughout a terminal illness – loss of work, social roles, friendships, connection to community, and 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.
Near the end of life, the focus of medical care is usually on maintaining your quality of life, and controlling pain and other symptoms.
As you approach the final days or hours of life, the body’s systems start shutting down. It is natural to feel concerned about others witnessing some of these physical changes. Your medical team understand this and can help explain what is happening to your family and friends.
Some people find it reassuring to know more about what might happen in the last stages, when they may no longer be fully conscious, but others find it distressing.
Symptoms at the end of life
As cancer progresses, it can cause various symptoms. These symptoms may not occur in everyone, and some may not occur until near the end. People who are dying, and their families and carers, often worry about how these symptoms will be managed.
The health professionals in your palliative care team will provide you with the highest possible level of comfort and care during your last days.
Many people with end-stage cancer worry they could spend their final days in pain, but not everyone does and for some, it may come and go. Controlling the pain may allow you to continue with your regular activities for some time and offer a better quality of life.
Everyone experiences pain differently, so it might take time to find the right pain management, which will depend on the type and intensity of the pain. Often a combination is used. You might be offered:
- mild pain medicine, such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs)
- moderate pain medicine, such as codeine
- strong pain medicine, such as morphine, oxycodone, hydromorphone and fentanyl
- complementary therapies such as massage or meditation.
You may also be given other types of medicine along with the main pain medicine. These could include:
- antidepressants and anticonvulsants for nerve pain
- local anaesthetics for nerve pain
- anti-anxiety drugs for muscle spasms
- a nerve block or epidurals (for pain that is difficult to manage).
Palliative care specialists are highly experienced in managing pain and won’t let you suffer. Some people worry about becoming addicted to pain medicine, but this is not a concern with end-stage cancer.
Tiredness and fatigue
Most people with a terminal illness feel extreme or constant tiredness (fatigue). Try to pace yourself and save your energy for the activities that are most important to you. Fatigue may affect your ability to think clearly and make decisions. This can be frustrating, particularly if you are trying to put your affairs in order. You may want to deal with these practical concerns at a time of day when you have more energy.
While some people sleep a lot at the end of life, others find it hard to sleep, which can make fatigue worse. If you’re having trouble sleeping, it may be because of anxiety, pain, a side effect of a medicine you are taking or a change in your sleep–wake cycle.
Let your palliative care team know, as they may be able to adjust your medicines or offer another medicine to help you sleep. They may also suggest you try complementary therapies such as meditation and relaxation. Improving the quality of your sleep will improve the quality of your waking hours.
Loss of appetite and feeling sick
Many people find they do not feel like eating as they near the end of life. This loss of appetite may be because of the cancer itself or symptoms such as pain, nausea, constipation or breathlessness, or because the body’s energy needs have slowed down and it’s no longer necessary to eat as much.
Don’t force yourself to eat – eating more than you feel like may only make you uncomfortable, and can cause vomiting and stomach pain. Try having small meals or eating your favourite foods more frequently. You could also eat soft foods or have food-type nutritional supplements. Ask your doctor, nurse or dietitian to recommend something suitable, as some are available as ready-made drinks at pharmacies.
It’s common for family and friends to want to encourage you to eat, as preparing food for you is how they show they care. You may need to let them know that you don’t feel like eating, and suggest other ways they can show their love, such as sitting with you.
As the disease progresses, the body reaches a point where it can no longer absorb or get nutrients from food. You may not be able to eat, and clear fluids such as water or weak tea may be all you can handle. There will come a time when even water isn’t wanted.
You may feel sick or have trouble keeping food down. Anti-nausea medicines (antiemetics) can help manage nausea and vomiting. These can be taken as tablets or, if swallowing is difficult, as wafers that dissolve on the tongue, as injections under the skin, or as suppositories, which are inserted into the bottom.
Breathlessness (dyspnoea) is common at the end of life. Breathing may become uneven, change rhythm and become noisy.
Your palliative care team will assess the cause of the breathlessness and manage it with medicine or practical measures. These include sitting near an open window, having a fan in the room or doing relaxation exercises. Adjusting your position in bed can also help.
Breathlessness may make you feel distressed, and this is likely to make the shortness of breath worse. Talk to your doctor about medicines that can ease your anxiety.
Facing End of Life
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Expert content reviewers:
Dr Megan Ritchie, Staff Specialist Palliative Medicine, Palliative Care Service, Concord Repatriation General Hospital, NSW; Gabrielle Asprey, Cancer Support Consultant, Cancer Council NSW; Rosemary Cavanough, Consumer; Louise Durham, Nurse Practitioner, Metro South Palliative Care Service, QLD; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Linda Nolte, Program Director, Advance Care Planning Australia, VIC; Rowena Robinson, Clinical Advisor, Palliative Care Australia, ACT; Helena Rodi, Program Manager, Advance Care Planning Australia, VIC.
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The information on this webpage was adapted from Facing End of Life - A guide for people dying with cancer, their families and friends (2020 edition). This webpage was last updated in September 2021.