Care and Support in the last few days of life

The nurses work closely with both the GP and the palliative specialist nurses to manage symptoms effectively. This booklet provides information for families, friends and carers in relation to caring for a loved one/client at the end of their life.

It includes information about symptoms that may be experienced, the care and support which may be provided and some questions that are frequently asked at this difficult time.

This booklet has a useful space for you to write down any questions or notes that the nurse or the GP may help you with.

Questionnaire

We value your feedback regarding the care and support that you and your relative/friend/client have received. Please would you consider completing a questionnaire? If you would rather not receive one please let a nurse know. Staff working at the Lancashire and South Cumbria NHS Foundation Trust pride themselves on their high standard and compassionate end of life care but are always striving to improve, which makes your opinion very important to us.

What could happen when a person is in the last few days of life?

Knowing what to expect may help to relieve anxiety and allow better planning. Individual experiences in the last few days of life can vary from person to person; it is very difficult to predict what exactly will happen but see below some common signs and symptoms that may show that a person is entering the last few days of life.

The person who is in the last few days of life may become very sleepy and spend most or all the time in bed. Periods of being awake may reduce and eventually, the person may be deeply asleep all of the time.
They may have difficulty swallowing and not want to eat or drink.
They may struggle to take medication by mouth.
They may lose control over their bowels and bladder.
Sometimes the person may show signs of distress or restlessness.
Their breathing may change and can sometimes become noisy.
Their hands, feet, legs and arms may feel cold to touch and their skin can become discoloured.
The person may become confused and disorientated.
They may become emotional and have spiritual questions.
They may lose interest in their surroundings and withdraw from people

For many people, dying is very peaceful but it can be upsetting to watch a person go through these changes. This is part of the natural end of life process and does not necessarily mean they are uncomfortable or in distress.

The nurses looking after your relative/friend/client in the last days of their life will be observing for any changes in their condition and will do all they can to make your relative/friend/client as comfortable and dignified as possible.

Stopping observations and medication

Your relative/friend/client may have been taking some medication and these may need to be stopped or changed if they are no longer helpful. Routine observations, for example blood pressure, regular blood sugar measurements or blood tests may no longer be carried out in the last few days of life as these may not be of benefit to the person and may cause distress.

Symptoms and Care

Changes in breathing

When someone is in the last few days of life, their need for oxygen may lessen and the way they breathe can change. People who have been breathless may feel less breathless at this time. Their breathing may pause for a while and then start again. People use different muscles to breathe which means that their breathing may look different.

Simple measures may help, such as opening a window, using a fan or changing the person’s position. Medication can also be given to help with breathlessness; morphine is usually given for pain, but it can be used for breathlessness and can be effective. This may be given by an injection under the skin or as a medicine by mouth.

Chest secretions

Everyone makes secretions (fluid) in their chest and throat. When someone is in the last days of their life normal secretions may not be able to be cleared and they make a person sound ’chesty’. This is due to a buildup of fluid in the air passages the breathing can sound noisy, but is not necessarily distressing for the person. Changing the position of the person may help.

Medication can also help to dry up some of the secretions and these can be given by injection or via a patch.

Pain

Not everyone who is at the end days of life will experience pain. Even if the person has difficulty communicating, it is usually possible to tell if they are in discomfort and the nurses can check for this. It is reassuring to know that there are several ways of relieving it. Changes in position may help, drugs such as morphine can be useful and can be given as a medicine by mouth or injection when needed. Medication will not be given unless they are needed.

Therapeutic measures can be used, such as a hot pack/hot water bottle wrapped in a pillow case or something similar and placed in the area that is causing the pain. Talking to them and stroking their hand, face or forehead can be reassuring and relaxing.

Distress and restlessness

As part of the natural dying process the person may become confused, distressed or restless. Sometimes hallucinations may occur.

This can be difficult for people to see, but measures can be taken to improve these symptoms. It can help to keep the environment calm and quiet, dim the lights and to gently reassure the person by holding their hand and talking to them.

Medication is available, which can help relieve these symptoms. The nurses and the GP will check for any other causes that might be contributing to the distress.

Sickness and vomiting

When a person is at the end of their life they might feel sick. There are many reasons for this and medication can be prescribed to relieve this symptom via an injection.

Bowels

As the person becomes weaker and their condition deteriorates they may not be strong enough to use the toilet or commode.

Often the bowels slow down and do not work as normal. Occasionally, due to muscle weakness, the person may lose control of their bowels. If they are very weak and unable to get out of bed, pads may be used.

Bowels will be assessed by the GP and nurses with the aim of maintaining dignity and comfort. This can be done by ensuring the person is not distressed when having a bowel movement. If they are uncomfortable then painkillers can be given.

Bowel medication can be considered to ensure a regular bowel pattern, if needed.

Bladder

As the body naturally slows down, the person may pass little or no urine and the urine may become dark in colour. Due to weakness, it may be too distressing to assist the person on and off the commode or toilet.

Pads can be offered to maintain dignity and comfort. For some people it may be kinder to have a catheter to drain the urine from the bladder. This will preserve their energy and ensure they remain dignified and comfortable. Catheters can also be used for people who have signs of retaining urine, which can cause distress and restlessness.

Eating and drinking

Loss of interest in eating and drinking is part of the dying process and it can sometimes be hard to accept. Some people may be able to take small amounts of food and drink, others may only be able to take sips of fluid and some may not wish or be able to have anything at all.

When a person is close to death, though it is possible to give fluids via a drip under the skin (subcutaneous), it is uncertain that this will prolong their life or help them feel any better.

The risk and benefits of fluids given by a drip at the end of life will vary from person to person, which the nurses looking after your loved one will assess regularly.

The person’s mouth may become dry, usually because they are sleepy and breathing through their mouth, rather than as a sign of dehydration.

Moistening the mouth with water, brushing their teeth and applying lip salve can help. Families/friends and carers can be taught to clean the person’s mouth if they wish and frequent care of the mouth and lips should be offered. Mouth hygiene packs will be provided by the Nursing Team.

Appearance

During the dying process, a person’s skin may become pale and moist. Their hands and feet can feel cold to touch and sometimes look bluish in colour.

Sometimes when a person stays in bed for a long time their organs aren’t working normally and fluid can collect in the arms and legs and become swollen.

Sleeping and drowsiness

People who are at the end days of their life often feel tired and will sleep more. Even when they are awake they may be drowsy and will be awake less and less. This can be upsetting, however, they may still be aware that family and friends are still with them, so you can still talk to them.

Eventually, the person may become unconscious. Sometimes this can be for a few hours, or even a few days.

Giving medication using a syringe pump

Sometimes a syringe pump may be set up by the nursing team. The syringe pump is used to deliver a constant dose of medicines usually over 24 hours and may contain more than one medicine at a time.

A very small needle will be inserted just under the skin in the abdomen, the arm, chest or the thigh through which the medicines will be given. A syringe pump means that the person can have the medicines they need and do not need a lot of individual injections.

If the person is at home, the family, friends or carers would need to collect any medication from a chemist. This would be arranged by the GP and nursing team.

Common medication used to relieve symptoms at the end of life

Medication	Reason for use	Notes
Morphine	Pain or breathlessness	Similar medicines may sometimes be used as an alternative such as Oxycodone or Fentanyl.
Midazolam	Agitation and restlessness
Levomepromazine	Nausea and vomiting	Different anti-sickness medicines may be used depending on why a person is feeling sick.
Glycopyrronium	Secretions in the chest	Sometimes a degree of chest secretions may persist even when the medicine is given.

Place of care in the last days of life

The person and their family, friends or carer may have wishes about where care should be at the end of life. Some people may have made their wishes in advance. It is important that we talk to you about this and where possible we would like to meet their wishes.

Some people choose to be cared for at home and if so the district nurses will visit and how often will depend on the person’s needs. They can be contacted 24 hours a day, you may have to leave a message but these are checked frequently and your telephone call will be returned. If the person is experiencing symptoms of pain, breathlessness, agitation, restlessness, nausea, vomiting or secretions the district nurses (DNs) will aim to respond as quickly as possible which is usually within two hours.

Other services in the community are available, including hospice at home and community palliative care nurses. The out of hours GP service can also support care at home/care home.

Hospice care may also be provided in some circumstances. The Palliative Care Team and the Nursing Team can make a referral to your local hospice as appropriate.

If you wish to have a keepsake, such as a finger print or lock of hair or photograph the DNs will be able to help you with this.

Religious, spiritual, emotional and cultural needs

When we or someone we know is at the end of life, we may find talking to someone can provide the support we need. Often this support comes from family and friends, but sometimes it helps to talk to someone who is independent.

At this difficult time some people may wish to have their religious, spiritual, culture or emotional needs supported. If a person has spiritual or religious belief please let the nurses know if there are values, beliefs, rituals and traditions that are important to your loved one.

Care after death

The death of someone close to you is significant and everyone reacts differently to the situation. After a person has died they will be seen by a GP or a nurse, therefore if you ring the district nurses they will be able to advise what needs to happen next.

The nurse will ask if anyone in the family wishes to assist with washing or dressing the person before going to the funeral directors of your choice. Should you have any spiritual, culture or practical wishes following the death – please talk to the nurses.

Tissue donation

When a person has died, they may be able to donate tissues (eyes, skin etc.) for transplant.

It may be possible for this donation to take place up to 24 hours after their death. Please speak to the nurses about this so that this can be arranged.

Frequently asked questions

Can a person hear and communicate with us even if they seem deeply asleep?

It can vary. Some people communicate by squeezing hands until they are too weak to communicate.

As their condition deteriorates further they will be able to communicate less. Sense of hearing is a fairly strong sense and it can be comforting for them to hear familiar voices from friends and family. It may even be appropriate to play music. It is unlikely that they will be able to continue to communicate with you if their condition deteriorates.

Is it best to let them rest and not disturb the person?

It is generally best to ensure a calm, quiet surrounding for them.

What do I tell the children?

Talking to children about a person approaching the end of life can be challenging and exactly what you tell them often depends on their age. Generally, it is best to be as honest as possible with children.

This can be distressing and hard but it can help children deal with things after the death a little better.

How long can I stay with the person once they die?

You can stay with the person as long as you feel you need following their death. The District Nursing Team will explain how to contact them and they will come and verify the death, which will then enable you to contact the funeral directors of your choice.