Facing End of Life
Near the end of life, the focus of medical care is usually on maintaining your quality of life, and controlling pain and other symptoms. This section describes the common symptoms experienced towards the end of life and how they can be managed.
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 has pain. Those who do have pain may not be in pain all the time – it may come and go. The various health professionals caring for you will help you control any pain as much as possible.
Everyone experiences pain differently, so it might take time to find the right pain management for you. Controlling the pain may allow you to continue with your regular activities for some time and offer a better quality of life.
The right pain relief for you depends on the type of pain you have and how intense it is. 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 with unrelieved pain. Some people worry about becoming addicted to pain medicine, but this is not a concern with end-stage cancer.
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.
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; 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, and family or friends can help keep your mouth moist.
You may feel sick or have trouble keeping food down, either because of the cancer or because of side effects from medicines you’re taking. 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.
As you approach the final days or hours of life, the body’s systems start shutting down. This may affect breathing, bladder and bowel function, and behaviour. Any changes can be managed to help you feel more comfortable.
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.
This information is reviewed by
This information was last reviewed February 2020 by the following 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.