Common symptoms experienced with life-limiting illness

A symptom is physical evidence of a disease or illness that you experience. Here we look at common symptoms often experienced with a life-limiting illness. Pain, breathlessness, fatigue (tiredness) and anorexia (poor appetite) are experienced by many people with palliative care needs. These may not be the same from person to person. They may be mild in some cases or more severe in others.

Health care professionals might sometimes use symptom terms that are new to you or the person you are caring for. Always ask if you are uncertain about something. Some common symptoms that people with palliative care needs may experience, and the terms used by clinicians for these include are listed here.

Poor appetite. This is common and can be due to many reasons including mouth problems, nausea, pain, constipation, or medication effects. Sometimes it can help if the person is offered smaller meals more often. Continue to keep mealtimes a social event if that is what you usually did in the past.

Being anxious is when a person feels scared or worried about something. Anxiety is when these feelings do not go away. It is common among people with palliative care needs. Staying with the person and reassuring them can help.

When bowel movements occur less frequently than usual. This can be due to many things including less intake of food and drink, less activity, medications, or even feeling anxious. Sometimes drinking more or drinking prune juice might help. Changes to toilet arrangements to provide more privacy or making it easier to use could also help.

Feeling sad for weeks, months, or even years. This might be something you have always experienced. It might also be due to your medications, stress, or your illness.

The loss of a lot of water from your body. This might happen with diarrhoea or vomiting. Offering drinks to sip or ice to suck can help.

Sudden confusion or inability to focus or understand what is going on. This is very common at the end of life but can also be due to other causes such as response to medications, infection, or hospitalisation. Reducing the level of noise and activity around the person might help. It is best to avoid arguing with the person.

Difficulty swallowing. This is more common in people with dementia or other brain diseases. The brain controls swallowing. As a disease progresses the ability to swallow can be lost. As a person nears death they often lose interest in food and drink. You can help to keep them comfortable by keeping their lips moist and offering small sips of drink if appropriate.

Trouble breathing or breathlessness. This shortness of breath can be due to many reasons including overall weakness due to your illness, lung problems such as asthma, and anxiety. It can help if you open a window or use a fan to give the person fresh air. You could also try to relax them with music or help to change their sitting position.

Extreme tiredness that does not go away with sleep. This can be distressing and is common in palliative care. Some causes can be treated. It can also help if you plan the day around when the person has more energy. Make time for regular stops to rest and think if some activities might be done less often e.g. taking showers.

Any leakage of urine or faeces (poo) that was not voluntary or was accidental. There are many causes and approaches to managing incontinence including medicines. Ask for advice and referral for a continence assessment.

Feeling that you want to vomit. This can happen for many reasons including your illness, medicines, food, or feeling anxious. It can help if you open a window or use a fan to give the person fresh air. Good mouth care is important and can also help with nausea.

Pain can be physical or emotional and how it is experienced is different for everyone. It is very common in advanced serious illness. But there are ways to manage pain and it is important to talk with your care team about this.

Talk to your health professional about any symptoms that you or the person you are caring for are experiencing. They also need to know if any symptoms get worse or if they improve. This may affect  medications or other therapies. Palliative Care South East has a Carer's toolkit with practical information and tips on what you can do to help manage symptoms.

Some tips for symptom management:

  • A symptom diary can be used to record any symptoms you or the person you care for have had. This could include when they occurred and what was done. Carers can help to record and report symptoms to health professionals. 
  • Always contact your health care team if you are unable to control any symptoms. Suffering is not a part of dying.
  • Pain is one of the symptoms that might concern you the most. There are ways to reduce the level of pain. Find out more about Pain in this section.

Last updated 09 July 2021