Facing End of Life
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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 – but not everyone will experience them, or they may only happen near the end. People who are dying, and their families and carers, often worry about how these symptoms will be managed. Your health care team will provide you with the highest possible level of comfort and care during your last days. If you experience symptoms, let them know so they can help.
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. An occupational therapist may be able to help with equipment at home to reduce the energy needed for daily activities such as showering.
Fatigue may affect your ability to think clearly and make decisions. You will also probably be told when you need to stop driving and doing other activities. This can be frustrating, particularly if you are trying to put your affairs in order. You may want to deal with any demanding or 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 health care or palliative care team know. They may be able to adjust your medicines or offer another medicine to help you sleep. They may 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 with cancer worry about spending their final days in pain, but not everyone has pain. For some, pain comes and goes. The health professionals caring for you won’t let you suffer with unrelieved pain, and will help you to manage it as much as possible. Palliative care specialists are especially experienced in managing pain. It’s important not to just “put up with” pain and assume it’s normal. Controlling pain lets you continue activities for longer and offers a better quality of life.
Finding the right pain relief – Pain is managed depending on the type and intensity, and it may take time to find what works best for you. Complementary therapies, such as massage or meditation, may be used alongside prescribed treatments. A combination of pain medicines, some of which work in other conditions, is often used. You may be offered:
- mild pain medicine, such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs)
- strong pain medicine such as morphine, oxycodone, fentanyl and hydromorphone.
You may also be given other types of medicine along with the main pain medicine. These could include:
- antidepressant and anticonvulsant medicines for nerve pain
- local anaesthetics for severe nerve pain
- anti-anxiety medicines for muscle spasms
- a nerve block or epidural (for pain that is difficult to manage).
Sometimes pain medicine can be given as a continuous infusion, where a small cannula is inserted under the skin and the medicine delivered slowly by a pump. Most options can be organised to have at home.
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 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.
Eat what you want when you want it – Don’t force yourself to eat. Eating more than you feel like may only make you uncomfortable, and can cause vomiting and stomach pain. Instead, try having small meals or eating little bits of your favourite foods more frequently. Soft foods can be easier to eat.
You could also try food-type nutritional supplements. Ask your doctor, nurse or dietitian to suggest 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 often how they show they care. They may worry that not eating will make you feel worse. You may need to let them know that you don’t feel like eating, and suggest other ways that 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. This can be distressing but your health care team can help manage nausea and vomiting with anti-nausea medicines (called antiemetics). 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.
I hated certain smells and did all I could to avoid them. My mouth felt very dry, which made food unappetising. Adding extra sauce helped.” HELEN
Breathlessness (dyspnoea) is common at the end of life. Breathing may become uneven and noisy in the final days or hours of life.
Your health care or palliative care team will assess the cause of the breathlessness and manage it with medicine or other practical measures. These may include sitting near an open window, having a fan in the room or doing relaxation exercises. Having a comfortable bed, leaning on a pillow while sitting, or changing your position when you’re in bed can also help.
Breathlessness can be distressing, and feeling anxious about it can make it worse. Talk to your doctor about medicines that can ease your anxiety or try relaxation techniques like mindfulness and meditation.
As you approach the final days or hours of life, the body’s systems start shutting down. This may affect your 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.
Donating organs and tissue
Organ and tissue donation is possible for some people with cancer, depending on the cancer type and spread. You will need to organise paperwork for this ahead of time (usually 6 weeks before death). Ultimately, whether your organs or tissue can be used will be decided by a doctor after the death. You need to be in a hospital to donate organs but this isn’t necessary for tissue. To record your wish to donate tissue or organs, visit DonateLife. Share your decision with family as they will be asked to give consent after your death.
This information is reviewed by
This information was last reviewed July 2023 by the following expert content reviewers: Prof Jane Phillips, Head, School of Nursing and Professor, Centre for Healthcare Transformation, Queensland University of Technology and Emerita Professor Palliative Nursing, University of Technology Sydney, NSW; Prof Meera Agar, Palliative Care Physician, Professor of Palliative Medicine, University of Technology Sydney, IMPACCT, Sydney, NSW; Sandra Anderson, Consumer; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Prof Lauren Breen, Psychologist and Discipline Lead, Psychology, Curtin University, WA; David Dawes, Manager, Spiritual Care Department, Peter MacCallum Cancer Centre, VIC; Rob Ferguson, Consumer; Gabrielle Gawne-Kelnar, Counsellor, Psychotherapist and Social Worker, One Life Counselling & Psychotherapy, NSW; Justine Hatton, Senior Social Worker, Southern Adelaide Palliative Services, Flinders Medical Centre, SA; Caitlin MacDonagh, Clinical Nurse Consultant, Palliative Care, Royal North Shore Hospital, Northern Sydney Local Health District, NSW; McCabe Centre for Law and Cancer; Palliative Care Australia; Belinda Reinhold, Acting Lead Palliative Care, Cancer Council QLD; Xanthe Sansome, National Program Director, Advance Care Planning Australia; Kirsty Trebilcock, 13 11 20 Consultant, Cancer Council SA.