Near the end of life, the focus of medical care is usually on maintaining your quality of life, and making sure that pain and other symptoms are well controlled. 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 a range of symptoms. 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 work to provide you with the highest possible level of comfort and care during your last days. Ask them any questions you have if you would like to have a good understanding of what to expect.
Many people with end-stage cancer worry they could spend their final days in pain, but not everyone with cancer has pain. If you do, the health professionals caring for you will help you control the pain as much as possible.
Everyone experiences pain differently, so it might take time to find the right pain treatments for you. Controlling the pain may allow you to continue with activities you enjoy for some time and offer a better quality of life. Even if you have experienced pain from cancer, it will not necessarily get worse as you get closer to dying.
The right pain relief for you depends on the type of pain you have and how intense it is. 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.
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 the management of pain and won’t let you be in unrelieved pain. Some people worry about becoming addicted to pain medicine, but this is not a concern with end-stage cancer.
For more information, see Overcoming Cancer Pain or call Cancer Council 13 11 20.
Help from family and friends
This is the time to let your family and friends help you. People often want to help in whatever way they can, so accept their assistance if they offer. If you want to complete a specific task, invite family members or friends to help, or make a list of tasks you’d like their assistance with.
You might like to ask one person to coordinate offers of help, or you could use a website such as lovlist.org or caringbridge.org. These websites allow members of your social circle to sign up for tasks you nominate and simplify the process of organising assistance.
Tiredness and fatigue
Having a terminal illness will almost certainly leave you feeling fatigued. Try to pace yourself and save your energy for the activities that are most important to you.
The fatigue may affect your ability to think clearly and feel confident about making decisions. This can be frustrating, particularly when you are dealing with the practical concerns. If you are trying to put your affairs in order for family members, you may want to do this at a time of day when you have more energy.
Some people sleep a lot at the end of life, but others may struggle with sleep disturbance, which can make fatigue worse. If you find it hard to sleep, it may be because of anxiety, pain or a side effect of a medicine you are taking. In any case, 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 complementary therapies such as meditation and relaxation. Improving the quality of your sleep will improve the quality of your waking hours.
Loss of appetite
Many people find they do not feel like eating as they near the end of life. This loss of appetite may be because of other 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.
You don’t have to 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. Another option is liquid meals. Ask your doctor, nurse or dietitian to recommend something suitable.
It’s common for others 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 by giving you a hand or foot massage or reading aloud to you.
As the disease progresses, the body reaches a point where it can no longer absorb or get nutrients from food. Clear fluids such as water or weak tea may be all you can handle. There will come a time when even this isn’t tolerated, and family or friends can help keep your mouth moist. See How you can help in the final stages for ways others can offer comfort.
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. Nausea and vomiting can usually be managed with medication. Anti-nausea medicines (anti-emetics) 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 and absorbed through the lining of the rectum.
Shortness of breath
Breathlessness, also called dyspnoea, is common at the end of life. Breathing may become uneven, change rhythm, and become noisy. Your palliative care team will assess if something is causing the dyspnoea and manage it with medicine or practical measures, such as being placed near an open window, having a fan in the room or trying relaxation exercises. Adjusting your position in bed or sitting up slightly can also help.
Feeling breathless may make you feel distressed and anxious, and this is likely to make the breathlessness worse. Talk to your doctor about medicines that can ease your anxiety.
As you approach the final days or hours of life, various symptoms can occur as the body’s systems start shutting down. These may affect breathing, bladder and bowel function, and behaviour. Such symptoms can be managed to help you feel more comfortable.
It is natural to feel concerned about others witnessing some of these physical changes. However, the changes are a normal part of the dying process. 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.
Thoughts about euthanasia
If an illness is prolonged or very debilitating, some people think about speeding things up. Euthanasia is when somebody’s life is deliberately ended to relieve them of their suffering from an incurable condition or illness. Physician-assisted suicide is when a person ends their own life with the help of a doctor.
In 2016, both euthanasia and physician-assisted suicide were illegal in every state and territory in Australia. There is currently much discussion of these issues, and the laws are under review in some places (visit end-of-life.qut.edu.au for updates). Regardless of the law, some seriously ill people consider this path.
Sometimes a person with cancer may decide that they want their death hastened, but later decide that they don’t. They may have thought that way because they were feeling particularly ill, scared or worried about the strain they were putting on others.
If this is how you feel, discuss your concerns with a doctor, counsellor or social worker. Sometimes these feelings are due to depression or a sense of helplessness, or because pain or other symptoms are not being well controlled.
Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to your doctor or nurse about any physical or emotional symptoms that are causing you pain or distress, and find ways to make your final days more comfortable.
If you urgently need somebody to talk to because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time.
Reviewed by: Kerrie Noonan, Clinical Psychologist, Palliative Care, Liverpool Hospital, and Director, The GroundSwell Project, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Ann Branford, 13 11 20 Consultant, Cancer Council SA; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; John Haberecht, Director of Learning and Development, Centre for Palliative Care Research and Education, QLD; Marjorie Hunter, Consumer; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Cecilia van Raders, PalAssist Coordinator, Cancer Council Queensland.