Care and support in the last days of life

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

• They may become very tired and spend most or all day in bed resting and sleeping. Periods of being awake may reduce and eventually the person may be deeply asleep all of the time
• They may not want to eat or drink
• They may have difficulty swallowing They may struggle to take tablets or medicines by mouth
• They may lose control over their bowels or bladder
• They may show signs of distress or restlessness
• Their breathing may change and can sometimes become noisy
• They may become confused or disorientated
• They may become emotional and have spiritual questions
• They may lose interest in their surroundings and withdraw from people

We understand that it can be upsetting to watch a person go
through these changes. These changes are part of the natural dying process and do not necessarily mean they are
uncomfortable or in any distress. For many people dying is very peaceful.

The doctors and nurses looking after a person in the last days of life will regularly review them and check for any changes. They will do all that they can to make the person as comfortable and dignified as possible.

A person may have been taking some medicines for many
months or years. In someone who is in the last days of life these medications may no longer be helpful and therefore will be stopped or changed. The doctors and nurses will review this and discuss the plan with you.

In the last days of life, routine observations, such as blood
pressure monitoring, regular blood sugar measurements or blood tests often provide no benefit to the person. They may cause unnecessary distress and therefore may no longer be done.

Common symptoms that a person may experience include pain, breathlessness, agitation/distress, excess respiratory
secretions and nausea and vomiting. Nurses will identify and
frequently monitor these using the Symptom Observation Chart which allows for assessment of symptoms even if the person is unable to verbalise. Anticipatory medicines are prescribed for all patients and will be administered if needed.

The breathing pattern can change as the body slows down.
Breathing may be fast, shallow or deep and there may be pauses between breaths.

Should breathlessness be experienced there are simple
measures that may help. These can include opening a window, using a fan or changing position. The patient may require a small dose of morphine. Morphine is usually given for pain, but it can also be used for breathlessness and can be very effective. This may be given by an injection under the skin or as a medicine by mouth.

Oxygen requirements may be reassessed and whilst it may be useful for some patients, for others, oxygen may no longer be needed.

Everyone makes secretions (fluid) in their chest and throat. When someone is in the last days of their life, they might not be aware of these secretions, especially if they are deeply asleep, or they might not be able to clear them. This can make the person sound “chesty”. This is due to a build-up of fluid in the air passages.

The breathing can sound noisy, but this is often not distressing for the person. In fact, this often means the person is very relaxed and deeply asleep. Changing the position of the person may help. Medications usually given by injection can also help to relieve this symptom.

Not everyone who is dying will have pain. Even if the person has difficulty communicating, it is usually possible to tell if they are in discomfort and the doctors and nurses will regularly check for this.

If there is pain, it is reassuring to know that there are several ways of relieving it. Changes in position may help. However, for others it may be best not to change the position. This will be assessed on an individual basis. Drugs such as morphine can be useful and can be given as a medicine by mouth or by injection when needed. Medications will not be given unless they are needed.

As part of the natural dying process the person may become
confused, distressed or restless. Sometimes hallucinations may occur. This can be difficult for family and others to see, but measures can be taken to improve these symptoms.

It can help to keep the environment calm and quiet and to gently reassure the person, for example by holding their hand and talking to them.

Medicines are available which can help relieve these symptoms. The doctors and nurses caring for the person will check for any other causes that may be contributing to the distress.

When a person is in the last days of life, they may feel sick. There are many possible reasons for this which the doctors and nurses will assess on an individual basis. The person may feel sick when they are moved or certain smells may trigger sickness. Medicines can be prescribed to help relieve this symptom via an injection.

As a person becomes weaker and their condition deteriorates, they may not be strong enough to use a 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 are unable to get out of bed, pads may be used.

Bowels will be assessed by the doctors and nurses with the aim of maintaining dignity and comfort. This may be done by
ensuring the patient is not distressed when having a bowel
movement. If they are uncomfortable, then pain killers could be given. Suppositories could be considered to ensure a regular bowel pattern if needed.

As the body naturally slows down, the person may pass little or no urine and the urine may become very dark in colour. Due to weakness, it may be too distressing to assist the person on and off a commode or toilet. In order to maintain dignity and comfort pads can be offered.

For some people it may be kinder to have a catheter to drain urine from the bladder. This will preserve their energy and ensure they remain dignified and comfortable. If appropriate, this will be discussed with the family and others.

Catheters can also be used for people who have signs of retaining urine, which can cause distress and restlessness.

In the last days of life people usually become less interested in eating and drinking and this normal. Some people may be able to take small amounts of food and drink; others may only be able to take sips of fluid. Some may not wish, or be able, to take anything at all.

People will always be supported to take oral fluids and food as they wish and are able to. It is possible to give fluids by a drip into the vein (IV) or under the skin (subcutaneous). When a person is close to dying, there is no evidence that this will help them to live longer or that it will improve their symptoms.

The potential benefits and risks of fluids given by a drip will vary from person to person. The doctors and nurses looking after your loved one will assess each person individually and will discuss the plan with you.

Providing good mouth care and ensuring that the mouth is clean and moist can help with a dry mouth and can provide comfort. Gels may be given to help with this. Families and others can be taught to clean the person's mouth if they wish. If a person is unable to drink, frequent care of the mouth and lips should be offered.

For patients who are very close to dying, there is no evidence
that feeding via tubes or drips lengthens survival or improves
their quality of life. In addition, there are risks and potential
discomfort related to inserting feeding tubes.

If you have any concerns or questions related to this, then please discuss with the clinical team.

Sometimes a small portable pump called a syringe pump may be prescribed and commenced to relieve any symptoms the dying person experiences or to replace regular medications, such as pain killers for example. The syringe pump is used to deliver a constant dose of medicines over 24 hours and may contain more than one medicine at a time. Symptoms will be monitored and the prescription for the syringe pump will be changed if needed. If the person experiences symptoms such as pain then additional medication can be administered.

A very small needle will be inserted just under the skin in the
tummy or arm through which the medicines will be given.
If the person is at home, the District Nurse will bring the syringe pump with them. The family or others would need to collect any medicines from a chemist. This would be arranged by the GP and District Nurses.

Some of the medicines used may cause drowsiness or other side effects. The doctors and nurses caring for your loved one will review them regularly and will adjust the medication to achieve the best balance possible between symptom control and side effects.

If you have any concerns about possible side effects or would like more information about the medicines used, please speak to the Nursing and Medical Staff.

The person and their family may have wishes about where they would like to be cared for when they are dying. Some people may have made their wishes about this known in advance. It is important that we talk to you about this and where possible we would like to meet their wishes.

If cared for in hospital, the person’s family can stay by the
bedside. The ward staff will discuss with you the facilities
available. You will be offered free car parking vouchers. We also have guest beds available if you wish to stay overnight.

People can also be cared for in their own home or care home in their last days of life. If the person is in hospital when this decision is made, the doctors and nurses will make arrangements with the aim of getting the person home as quickly as possible. District Nurses will provide the nursing care at home, for example undertake regular reviews, administer medication for symptoms, etc.

The District Nurses are available 24/7 and can be contacted both day and night. Equipment, such as hospital bed, and a care package are provided if needed. Other services in the communitymay be available, including Hospice at Home and Night Sits.

The Community Specialist Palliative Care team works along other services for patient with complex needs, for example for symptom management. The GP and out of hours GP service also support care at home or in the care home.

Hospice care may also be provided in some circumstances.
The ward or community team can make a referral to your local hospice as appropriate.

Each individual and their family will have different needs and
wishes when they are dying. If there is anything of particular
importance to you please speak to nursing staff about this. If the person is in hospital, this may include the privacy of a side room if this is possible.

Please feel free to ask the nurses to remove unwanted equipment from the room to ensure you can make the environment more personal. You may wish to bring the person’s own nightwear, blankets or dressing gown. Some families and others may want to be involved in assisting the nurses with comfort and care. If you do, please tell the nurses.

When we or someone we know is dying, 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, people may wish to have their religious,
spiritual, cultural or emotional needs supported. Hospital
Chaplains are approachable and non-judgmental and are
available 24 hours a day, 7 days a week to provide support for patients, families and others in the hospital.

If a person has spiritual or religious concerns at home, the nurses can contact local churches and appropriate faith groups to support them.

For further information regarding specific denominations and
support available, please contact the Chaplaincy Department on 01254 733632.

Families may want to record familiar sounds such as children,
grandchildren or family members who cannot be present, either singing or talking to the person. Playing favourite music may also be soothing.

Children are very welcome to visit to say goodbye to a loved one.