Last days of life - Information for families and carers

Last days of life

There comes a time in life when each of us has to think about death and dying, whether it is our own death or the death of someone close to us.

The last few days or hours of life will be different for each person. It can be difficult to predict what will happen or how quickly changes will occur. Some people may have concerns or anxieties due to previous experiences around death. It is important you feel able to ask questions in order to understand what is happening. The information in this leaflet may help, but please speak to the doctors and nurses as well.

The natural process of dying is one in which the body’s systems wind down; it is not unusual for people to lose interest in the world, not want food or drink, lose concentration and become drowsy, until eventually they cannot be roused. Even if a person is not interacting with you, they may hear you and may be aware you are there. If possible, ask them whether they would like you to be there.

It is uncertain how long it will be until death, but the medical and nursing staff will be there to support you and to answer any questions you may have.

Eating and drinking

As your relative / friend becomes weaker they may find the physical effort of eating and drinking too much.

When someone stops eating and drinking, it is natural for them and those around them to find this concerning as it indicates their condition is deteriorating and it becomes more evident they are dying. You may wonder if fluids or food can be given artificially; if possible this will be discussed with your relative / friend, but fluids will only be given if they are helpful not harmful.

A dry mouth may cause discomfort. It is important that attention is given to caring for the mouth. Using water to moisten the mouth and applying lip salve to the lips can be beneficial and comforting. Please ask the nursing staff if you wish to help with this care.

Personal care

During the last few days of life your relative/ friend may need assistance with personal care. Their position will need to be changed on a regular basis and skin will need to be cleaned and moisturised to ensure they are comfortable and do not become sore.

Special mattresses may be provided by the nursing team to ensure that they are comfortable.

There may be times when your relative/friend prefers not to be moved and wishes to be allowed to lie quietly and peacefully. Nursing staff will respect their wishes, although there may be occasions when they do need to be moved to prevent pressure and soreness, and to maintain their comfort and care.

Care of the bladder and bowels

Sometimes your relative / friend may have difficulty controlling their bladder or bowels. Nurses will check on a regular basis to ensure your relative / friend is kept clean, dry and comfortable. They may discuss the use of aids such as pads or a catheter.

Changes in breathing

Often the pattern of breathing changes towards the end of life. It may become slower or more irregular with pauses between breaths. It may seem to take a long time for the breathing to finally stop, on the other hand sometimes it can occur quite quickly.

Your relative / friend may develop a rattle when breathing due to secretions, which they can no longer clear by coughing. Usually this is not distressing for your relative / friend. Medications and repositioning may help to reduce the sound.

Restlessness

Sometimes your relative / friend may become agitated or restless and may call out. This is known as terminal restlessness. Agitation and restlessness may be due to a full bladder or bowel. This will be managed by the nursing staff.

Sometimes the discomfort is not physical, but emotional. In this case your relative / friend may find comfort in the presence of a family member or friend, or someone else important to them, such as a spiritual or religious leader.

If medications such as sedatives are required to relieve restlessness, the team will explain this to you.

Symptoms

All symptoms will be reviewed regularly and medications to treat them will be available.

Medication will be given in the most appropriate way; this may include injection, use of a ‘syringe pump’ or ‘patches’. How the medication is to be administered will be carefully considered and fully explained to you

Pain

Not every dying person has pain. If your relative / friend has had pain controlled with medications, these will be continued. If they appear to be in pain (restless or grimacing), the medical and nursing staff will assess and discuss the need for additional medication and give this as needed along with explaining the situation to you.

Spiritual needs

Many people who are dying have religious or spiritual needs and may ask for support as the time of death draws closer. Family and friends may also have religious or spiritual needs.

The hospital chaplaincy team can be contacted by the ward staff, but you are welcome to invite anyone who has supported you previously. If you need a quiet space to reflect, ask the nursing staff for directions to the chapel where you will find a multi-faith space.

Please let the nursing staff know if your relative / friend wishes someone to be with them. The nursing staff will make a note of their supporter’s name and contact details.

Support

The hospital staff are there for you as well as the patient. Please ask for support and feel free to ask questions.

Please use the space below to list the people involved in the care of your relative / friend and their contact details:

Ward: ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...

Consultant: ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...

Specialist nurse: ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...

Other: ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...