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One of the most frequently asked questions from carers is around managing symptoms at the end of life. Below is a list of some of the most common symptoms at the end of life. This is regardless of the type of disease the person you are caring for has.
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Always discuss any symptoms that concern you with the health care team. If the person you are caring for has symptoms that are very uncomfortable then you may want to ask your doctor for a referral to a palliative care team. Palliative care is an area of health care that focuses on managing end of life symptoms and improving quality of life. For any symptoms, we suggest you keep a diary so that you can show the health care team what has been happening, how often, and what you have already tried to manage a symptom.
Changes to breathing are a common symptom at the end of life. The way a person breathes can change as the body slows down and death approaches. Breathing can also change if a person is anxious or in pain. Breathing as death approaches may be slow, shallow, irregular with long pauses between breathes, rapid or noisy or rattly. The following tips might be useful:
If breathlessness is not relieved and is causing distress, talk to your health care team.
People who experience delirium have difficulty remembering things, trouble concentrating and sometimes may have difficulty distinguishing between day and night. The person with delirium may not recognise familiar people or places, or they may become fixated on one thing or become suspicious. It can sometimes cause hallucinations when people see things that aren’t actually there.
Delirium or confusion at the end of life is common and may be reversible or temporary. It can be distressing for you as the carer and also for the person you are caring for.
It is usually caused by a change in brain function which can be a result of the illness or sometimes medicines. It can also happen following a surgery or when someone has an infection.
The doctors treating the person you are caring for will do their best to identify the cause of the delirium and treat it. However, for people who are at the end of life and close to death, the delirium may not fully settle.
Ways to help your family member are to:
Constipation is when there is no bowel motion for several days. Constipation can be caused by many things and may cause the person you are caring for to feel nauseated and uncomfortable.
If constipation is causing a problem, talk to the health care team so they can prescribe the most appropriate medication.
Maintaining a healthy bowel can be difficult for someone at the end of life. If possible:
If the person you are caring for is prescribed strong pain medicine, also request laxatives. If there is no bowel action for two days, talk to your health care team.
Constipation can occur even if the person is not eating much food.
Fatigue is a persistent feeling of tiredness, weakness, or lack of energy and is very common with people who are at the end of life. Fatigue can also present as feeling heavy or heavy-limbed, having an altered sleep pattern, difficulty carrying out usual tasks, memory loss, difficulty with concentration, low mood and lack of motivation.
The possible causes of fatigue include:
Fatigue can be hard to manage but the following tips may help.
If you think that the person’s fatigue has gotten worse, talk to your health care team. However, it is not always possible to prevent this decline.
At the end of life, people may lose the ability to control their bladder or bowels and pass urine and/or faeces onto their clothing or bedding. This is known as incontinence.
Diarrhoea can cause incontinence. This could be a one-off thing or could be what’s called ‘overflow’ from when a person is constipated. If the person you are caring for has had constipation and then develops diarrhoea you should talk to the health care team before taking any more medicine for constipation or diarrhoea.
Incontinence can be a result of:
Helping your friend or family member to use a bedpan or go to the toilet may make you and the person you are caring for feel embarrassed and uncomfortable. Please speak to the health care team if you would like assistance.
Suggestions for managing incontinence:
Sometimes a urinary catheter can be inserted which drains urine into a bag thorough a tube.
Feeling like you are going to vomit is described as nausea. Feeling nauseated is common for people at the end of life. This may be because they are constipated, have reduced appetite, or due to the medicines they are taking.
It is good to treat nausea early. Ways to help may include:
If someone is weak, you may need to assist them if they are vomiting. Some important tips when managing vomiting include:
There are many reasons for pain towards the end of life. To better understand the pain, you may want to ask the person you are caring for the following questions:
This information will assist the health care team.
The person you are caring for may already have chronic pain however please contact your health care team if:
Cool skin can be a common symptom at the end of life. Use warm blankets and keep the person comfortable.
An increase in body temperature is common. Using a cool and moist cloth on the forehead and neck can be comforting.