Understanding Palliative Care
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Understanding Palliative Care
Medical treatment is a key part of palliative care. It aims to manage the symptoms of cancer without trying to cure the disease. The treatment you are offered will depend on your individual needs, what type of cancer you have, how far it has spread, your symptoms, and the support you have. Some examples of palliative treatment include:
- radiation therapy to reduce pain (e.g. if cancer has spread to the bones, or a tumour is pressing on nerves or organs)
- chemotherapy or targeted therapy to stop the cancer growing into other organs
- surgery to reduce tumours causing pain or other symptoms
- medicines to control symptoms and relieve discomfort.
The next section describes cancer treatments that can be used palliatively. Let your palliative care team know about any side effects you may have so they can be managed.
Making treatment decisions
You have the right to say no to any treatment recommended, but your medical team need to be confident that you understand what you’ve been offered and how not having the treatment may affect your prognosis. You do not have to accept treatments on an all-or-nothing basis – you can refuse some and accept others. Treatments can cause significant side effects, and some people choose not to have active treatment for the cancer but to focus on controlling their symptoms to reduce pain and discomfort. You may want to discuss your decision with the treatment team, GP, family and friends, or call Cancer Council 13 11 20.
Surgery can be used to:
- remove all or part of a tumour from affected areas, such as the bowel or lymph nodes
- relieve discomfort caused by tumours blocking organs or pressing on nerves
- reduce tumour size (debulking) to help improve outcomes from chemotherapy and radiation therapy
- insert a thin tube (stent) into a blocked organ to create a passage for substances to pass through.
Drugs can travel throughout the body. This is called systemic treatment. Drug therapies include:
chemotherapy – the use of drugs to kill or slow the growth of cancer cells
hormone therapy – drugs that stop the body’s natural hormones from helping some cancers to grow
immunotherapy – treatment that uses the body’s own immune system to fight cancer
targeted therapy – drugs that target specific features of cancer cells to stop the cancer growing.
Some drug therapies: can shrink a cancer that is causing pain because of its size or location; slow the growth of the cancer; and help control symptoms, including pain and loss of appetite. Other drug therapies can reduce inflammation and relieve symptoms such as bone pain.
This uses a controlled dose of radiation to kill or damage cancer cells so they cannot grow, multiply or spread. Radiation therapy can shrink tumours or stop them spreading further. It can also relieve some symptoms, such as pain from secondary cancers in the bones. You can have radiation therapy in different ways and doses. It can be given in single or multiple visits.
One of the main aims of having palliative treatment is the relief of symptoms. These symptoms can impact your quality of life and be distressing for your family. While it may not be possible to alleviate all symptoms, the suggestions below can help make you as comfortable as possible. It may take time to find the most effective treatment – let your palliative care team know if a treatment is not working, as they may be able to offer an alternative. For more information and support, call Cancer Council 13 11 20.
Whether you have pain will depend on where the cancer is and its size. Pain is different for everyone, and even people with the same type of cancer can experience different levels of pain. Palliative care services are specifically trained in pain management. If you do have pain, they will help you control the distress it is causing as much as possible.
Many people need a combination of treatments to achieve good pain control. Ways to relieve pain include:
- pain medicines, such as non-steroidal anti-inflammatory drugs and paracetamol for mild pain, and opioids (such as morphine, oxycodone, hydromorphone and fentanyl) for strong pain
- other types of medicine for nerve pain, such as antidepressants, anticonvulsants and local anaesthetics
- anti-anxiety drugs for muscle spasms
- procedures such as implanted devices, nerve blocks and epidurals for pain that is difficult to manage
- other treatments, such as physiotherapy, complementary therapies (e.g. massage, acupuncture) and psychological interventions (e.g. relaxation, mindfulness, distraction techniques)
- surgery, drug therapies and radiation therapy.
Some people worry about becoming addicted to pain medicine but this is unlikely when medicines are taken palliatively. Your health care team will monitor you to avoid potential side effects. Any side effects, such as constipation or drowsiness, can usually be managed. Taking high-strength opioids (such as morphine) as prescribed will not shorten life or interfere with your breathing – people may even live longer with better quality of life when their pain is treated.
Talk to a specialist palliative care service if the dose you have been prescribed does not relieve your pain. Ask your specialist palliative care team or your GP to regularly review your pain management plan, especially if you have side effects from the pain medicine.
Ways to manage medicines
If you’re taking several different medicines throughout the day, there are many ways to remember what you need to take and to help ensure you have the correct dose at the right time.
- Ask your palliative care team for a list of medicines and what each one is for.
- Ask your pharmacist to put your tablets and capsules into a medicine organiser (e.g. Websterpak), which sets out all the doses you need to take throughout the week. This will help you take the correct dose of each drug at the right time.
- Keep a medicines list to record what you need to take, when to take it and how much to take.
- Download the MedicineWise app from the App Store or Google Play or order a printed NPS MedicineWise list at nps.org.au/order. You can also create your own list on paper or computer.
Many people with advanced cancer do not feel like eating or drinking. This may be because of the cancer or a side effect of treatment. Loss of appetite may also be caused by anxiety, fatigue or depression. However, food and drinks help maintain your strength and bowel movements, which improves your quality of life.
Loss of appetite – You don’t need to force yourself to eat. This may make you feel uncomfortable, and cause vomiting and stomach pain. Try having small meals, eating your favourite foods more frequently, and relaxing your usual dietary restrictions. It is common to feel less hungry as the disease progresses – talk to your palliative care team if you are concerned. They may suggest you drink nutritional supplements.
Nausea – You may feel sick (nausea), have reflux or have trouble keeping food down, either because of the cancer or as a side effect of a medicine you’re taking. You will probably be given anti-nausea medicine that you can take regularly to relieve symptoms. Finding the right one can take time – if you still have nausea or vomiting after using the prescribed medicine, let your palliative care team know so the dose can be adjusted or another medicine can be tried. Constipation can also cause nausea and appetite issues.
Having an empty stomach can make your nausea worse – try to eat something soon after getting up in the morning and then eat small meals and snacks regularly throughout the day. Avoid fried, greasy, spicy and strong-smelling foods. Try to drink water or other fluids, and consider eating foods with ginger, which can ease nausea.
Difficulty swallowing – If chewing and swallowing become difficult, you may need to change the consistency of your food by chopping, mincing or pureeing. A speech pathologist can check how you’re swallowing.
Many people have difficulty passing bowel motions (constipation), often as a side effect of opioids, cancer treatments or other medicines, or because of changes to what they’re eating or how much they’re moving.
The usual suggestions for managing constipation, such as drinking lots of water, eating a high-fibre diet and exercising, may not be possible if you feel unwell. Your treatment team will discuss other ways of managing constipation, such as laxatives and stool softeners.
Breathlessness (dyspnoea) is an uncomfortable feeling of being short of breath. It may be caused by the cancer itself, an infection, a side effect of treatment, anxiety or an underlying disorder such as asthma or emphysema.
Depending on the cause, breathlessness may be managed with taking medicine (such as low-dose morphine), draining fluid from around the lungs, or having oxygen therapy (if your oxygen levels are low). Simple ways to improve breathlessness are to:
- sit near an open window
- use a handheld fan to direct a cool stream of air across your face
- sleep in a more upright position
- listen to a relaxation recording – try our Finding Calm During Cancer podcasts.
Fatigue is a feeling of extreme tiredness or weakness. It is different from normal tiredness, as it doesn’t always go away with rest or sleep. Fatigue can be caused by the cancer itself, cancer treatment, depression or anxiety, poor sleep, an infection, anaemia, weight loss or medicines.
Your palliative care team may be able to adjust your medicines or treat the cause of the fatigue. A physiotherapist, exercise physiologist or occupational therapist can explain how to modify your activities to help you conserve your energy.
You may find that the fatigue gets worse as the disease progresses – complementary therapies such as meditation and relaxation can reduce distress and help you and your family cope.
When you are referred to palliative care or while you are having palliative care, you will probably experience a range of emotions. Many people feel shocked, fearful, sad, anxious, guilty or angry. Others feel relief or a sense of inner peace.
It is quite common for people diagnosed with advanced cancer to have continued feelings of depression. Signs of depression include trouble thinking clearly, losing interest in things you used to enjoy, or changes to sleep patterns and appetite. If you think you may be depressed, it is important to talk to your doctor, because counselling or medicines – even for a short time – can help.
You may find that while some friends and family members are supportive, others may avoid you or not know what to say. This can be difficult, and you could feel isolated or upset. Advanced cancer can mean changes to your lifestyle – at some point, you may need to leave work, stop driving or give up other activities that are important to you. These changes can cause further sadness or stress. It will probably help to talk to someone. Your partner, family and close friends can offer support, or you might prefer to talk to:
- members of your palliative care or treatment team
- a counsellor, social worker or psychologist
- your religious leader or spiritual adviser
- a telephone support group or peer support program
- Cancer Council 13 11 20.
People with advanced cancer usually experience major physical and psychological changes. While these can have an effect on how you feel sexually, it doesn’t mean that intimacy needs to end.
For many people, intimacy can provide comfort and maintain connection. Even if sexual intercourse is no longer possible or desired, you may enjoy physical closeness through cuddling, stroking or massage.
Talk with your partner about your feelings and concerns about the sexual changes in your relationship, and ways to maintain intimacy. If you have concerns about sexual intimacy, talk to your GP, nurse or psychologist.
You may wonder whether you should try complementary and alternative therapies. It is important to understand how they are different.
Complementary therapies are designed to be used alongside conventional medical treatments. Therapies such as meditation, massage and acupuncture can increase your sense of control, decrease stress and anxiety, and improve your mood. Let your doctors know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based.
Alternative therapies are therapies used instead of conventional medical treatments. These are unlikely to be scientifically tested and may prevent successful treatment of the cancer. Cancer Council does not recommend the use of alternative therapies as a cancer treatment.
Your doctor or nurse may suggest that you take part in a clinical trial. Doctors run clinical trials to test new or modified treatments to see if they are better than current methods. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, clinical trials have improved palliative care and the management of common symptoms of advanced cancer, and led to better outcomes.
You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time.
You can also visit Australian Cancer Trials for more information.
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This information is reviewed by
This information was last reviewed August 2021 by the following expert content reviewers: Dr Cynthia Parr, Specialist in Palliative Care, HammondCare and Macquarie University Hospital, NSW; Dr Lisa Cuddeford, Clinical Lead, WA Paediatric Palliative Care Service, WA; Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; A/Prof Peter Poon, Director, Supportive and Palliative Care, Monash Health, and Adjunct Associate Professor, Monash University, VIC; Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Kate Reed-Cox, Nurse Practitioner National Clinical Advisor, Palliative Care Australia; Juliane Samara, Nurse Practitioner, Clare Holland House – Specialist Palliative Aged Care, Calvary Public Hospital, ACT; Annabelle Solomon, Consumer; Silvia Stickel, Consumer; Kaitlyn Thorne, Manager, PalAssist, Cancer Council Queensland; Kim Vu, Consumer; Rosie Whitford, Social Worker – Grief, Bereavement and Community Palliative Care, Prince of Wales Hospital, NSW.