Palliative Care Victoria

Pain and symptom management is a big part of palliative care because many people rate this as one of the most important issues at this stage of their treatment whether they are at home or in a hospital or other assisted care.

Palliative care specialists liaise and work with all the parties involved to treat and manage pain and symptoms in a coordinated plan. Often a palliative care nurse can suggest alternatives to GPs or specialists that provide a better pain management outcome.

Types of symptoms include:

• Pain
• Fatigue
• Frustration
• Difficulty breathing
• Difficulty swallowing
• Lack of appetite
• Constipation
• Hope and Hopelessness
• Confusion

Pain

Most people fear being in pain. Pain is a complex experience made up of many physical and psychological factors. The anticipation that pain is going to get worse may make pain worse. It is difficult to think and make decisions when you are in pain or frightened that pain will return.

The aim of pain control in palliative care is to make you pain free as far as possible and ensure that your pain is kept under control thereafter.

More information is contained within the Pain and Pain Management leaflet

Things to do at home to manage your pain

It is important to always report any new pain to your doctor even if you think you know the cause. If pain is treated early it may be managed with less medication or other treatment. Some useful suggestions to manage pain which you can discuss with your doctor and your local palliative care services include:

• Pain medications – their dose and frequency of use
• Keeping a pain diary, the use of cold/warm packs, and physical aids
• Frames (bed cradles) to keep linen and blankets off a painful area
• Back supports to make sitting more comfortable for you. Ask to speak to a physiotherapist who can advise you on what is available.
• Positioning yourself well can relieve pain

Constipation can make discomfort and pain worse and preventing constipation can prevent pain.

Fatigue

Many people find fatigue to be one of the most distressing symptoms they experience when living with a terminal illness. Fatigue can prevent you from enjoying activities or engaging with family and friends.

Fatigue may result from your disease but there may be other factors that can be contributing to how you feel. Medications, treatments, poor eating or sleeping patterns, anxiety, depression, conditions such as anaemia or low grade infection, uncontrolled pain or other symptoms may all contribute to fatigue. These factors should all be considered by your doctor, so that when possible, adjustments can be made to your treatment.

Useful tips on dealing with fatigue are contained within the Fatigue and Exhaustion leaflet.

Frustration

The everyday frustrations of life can be magnified when you have an illness you feel you can’t control. Frustration may lead to anger, or the feeling that you don’t care about anything. These feelings may get in the way of your ability to achieve what you want in life.

Talking is one way of dealing with your frustration. By talking with someone you may be able to work out what is causing your frustration. Often the cause of frustration can be difficult to pinpoint.

If the cause of your frustration is to do with the care or services you are receiving, you might think about what could be managed better. Share your thoughts and ideas with a health care professional who you think could make a difference. More information on problems and complaints.

Difficulty breathing

Difficulty breathing or breathlessness, sometimes called dyspnoea, can be a frightening and debilitating symptom. Often this is a symptom that can be improved with treatment. It is important to discuss any feelings of breathlessness you have with your doctor.

Good pain control is very important. Pain can reduce your ability to take deep breaths and to cough. As a result, secretions may gather in your chest and this can increase your breathlessness.
Useful websites relating to symptom management.

Difficulty swallowing

Swallowing is a complicated reflex action that we usually take for granted. Difficulty swallowing, sometimes called dysphagia, may be caused by many things and can cause distress to some people living with a terminal illness.

It is important to tell your doctor if you have any difficulty swallowing and you may be referred to a speech therapist and dietician in you area.

Lack of appetite

You may have a lack of appetite for many reasons. It may be due to your illness, medicine or treatment, or it may be due to other symptoms such as pain, fatigue, constipation, sore mouth and/or feelings of anxiety, sadness, emptiness or frustration.

If you are not eating, it is important that you speak to your doctor or nurse about this. Some of the causes for lack of appetite can be treated and there are medications available that can stimulate appetite. Weight loss often accompanies living with a terminal illness. However, you should not assume that a lack of appetite
cannot be treated.

The Nutrition in Palliative Care leaflet contains additional information and also includes tips on improving appetite.

Constipation

Constipation may result from the effects of your disease or from the medicines that you are taking. These causes, together with lower activity, eating and drinking less and changes in what you are eating and drinking all make constipation a very common problem.

There are things you can do to prevent constipation but it is important to tell your doctor or nurse if you think you are becoming constipated.

Hope and Hopelessness

Hope is an important ingredient of living a fulfilled life. The hopes we have help us to make plans and
to achieve goals.

If you are feeling down or that you have nothing to look forward to, it is important to talk to your doctor or healthcare professional about this. Your doctor will review all your medications and symptoms to ensure these are not the cause of your feelings.

Sometimes, feelings of hopelessness may indicate you are depressed and medication may help. Or, it may indicate you are overwhelmed by your diagnosis and talking with a counsellor may help you to sort out some of things that are contributing to this.

Confusion

Confusion can be caused by

Confusion and Terminal Restlessness leaflet contains additional useful information

Contact the palliative care service in your region if you require assistance in managing any of the above symptoms. More information on symptom management and links under symptom management.