What to Expect When Someone is Dying

An information leaflet around understanding the changes as the end of life approaches

Often patients, and those close to them, ask questions about what to expect when someone is near the end of their life. The dying process is unique to each person but there are common stages that many experience when they are in their last days or hours of life.
This leaflet explains these changes to help you know what to expect.
If you have any questions or concerns, please ask the staff caring for your relative.
In this leaflet we will refer to the person who is dying as ‘your
relative’, whilst understanding they may instead be a friend or a neighbour.

Supporting someone who is dying

As a person approaches the end of their life, we use an
Individualised End of Life Care Plan.
This care plan helps nurses and medical teams focus on what
matters to the person as they approach the end of their life. The
priority is comfort, ensuring that all care provided supports dignity,
and well-being. Some routine tasks, such as regular blood pressure
monitoring may no longer be necessary. If a person’s condition
starts to get better, the care plan can be adjusted at any time as it is
completely individualised to their needs.

Places of care

Many people will have thought about the place where they would
prefer to be cared for when they are dying. This is usually home,
hospital, nursing/residential home or a hospice. We will do our best
to support your relatives preferred place of care; however, this is not
always achievable.
If your relative would prefer to be at home or in a nursing/residential
home, the district nursing team, hospice at home team and general
practitioners can continue to support a person at end of life. The
teams will discuss this with you.
A hospice inpatient unit offers palliative and end of life care in a
comfortable environment. Admission is subject to bed availability and
level of need. For further information please discuss with the staff
looking after your relative.
For those patients in hospital, the nurses and doctors there can
provide palliative and end of life care in line with the Swan Model of
End of Life Care. This focusses on holistic and individualised care of
the patient and family.
Wherever your relative is being cared for, their comfort is the
most important thing, and position changes in the bed, will be
offered regularly, to help with the relief of pressure on bones and
joints.’ You can decline position changes if you feel your relative is
comfortable as they are, though sometimes it will be necessary for
the nurses to change position to assist with hygiene needs as well..
If your relative needs pain relief before a change of position, the
nurses can give this.
 

Medicines for comfort in the last days of life

People may have symptoms in the last days of life, such as
pain, feeling sick, restlessness or noisy breathing. Medicines are
prescribed so they can be used if needed, they are called the just-incase
medicines.
These medicines can be given by the nursing staff with a small
injection, or sometimes through a syringe pump, which gives a
steady dose all day and night. These medicines help keep the
person comfortable and do not shorten life. They may make
someone sleepier, but this is also very normal when a person is
dying.
Some everyday medicines may no longer be needed and can be
stopped. Others may still help and can be continued.

Food and drink at end of life

As a person nears the end of life, it is normal for them to eat and
drink much less.
Comfort feeding at end of life focuses on providing food and drinks
that bring pleasure to the person who is dying. It is important not to
force food and drink as it may cause discomfort. Our nursing and
medical teams can support you with advice and guidance.
Your relative will likely not want very much to eat or drink and often
stop completely. If a person cannot eat or drink and their mouth
becomes dry, it is important we keep their mouth clean and moist.
This can help reduce any feeling of thirst. You can use lip balm or
mouth-moisturising gels. Staff can provide these and show you how
to use them if you would like. We can also use Taste for Pleasure
– this is when the patients favourite tastes (liquids) are offered and
used during mouthcare.
When a person is dying providing water through a drip or other
tubes dose not usually make them feel better. It does not stop mouth
dryness and does not make them live longer, if you have concerns
discuss this with the staff. It can cause new problems such as
swelling of the hands and feet and can lead to fluid in the chest. This
is because the body is unable to process large amounts of fluid at
this stage.

Organ and tissue donation

Many lives are saved and enhanced through organ and tissue
donation every year. Only a small number of people die in
circumstances that would allow organ donation to take place. If
you like more information or to talk about what may be possible for
your relative, then please speak to a member of staff or call Tissue
Services on 0800 4320559 (24-hour telephone).

Religious, Spiritual, emotional and cultural needs

A person nearing the end of life might find their thoughts, feelings,
and beliefs, disturbed by the challenges of their illness. Support can
be provided to listen, offer comfort, and help patients find meaning
and peace. This can be tailored to your relative’s specific faith or
spiritual needs. There is support available through the chaplaincy
team and local faith groups.

Care and support available for you

If your relative is being cared for in a hospital, a care home or a
hospice, please speak to the staff about where the toilets are, where
you can get drinks and snacks, about car parking and visiting times.
If you would like to stay overnight with your relative, please speak to
staff about potential recliner chairs or foldaway beds.
Your relative may be in hospital and, dependent on their needs, may
be supported by our hospital palliative care team and/or the swan
end of life and bereavement team. The specialist palliative care team
consists of doctors and nurses with expertise in managing complex
symptoms and supporting individuals nearing the end of life. Not
everyone who is dying will require input from the specialist palliative
care team, as palliative care can often be provided by the ward
teams, sometimes with additional support from the Swan team.
The Swan Model of Care is used to support end of life and
bereavement care. The model empowers staff and family to ensure
personalised care is given to meet the specific needs of your
relative. Staff caring for your relative can arrange keepsakes such as
handprints, hairlocks and memory boxes, information about the next
steps and bereavement support. If in hospital the ward can refer to
the Swan team or you can self-refer. Contact details are at the back
of this leaflet.

Changes that can be seen in people who are dying

• A person may become very sleepy, wake up less often and may
eventually become unconscious.
• They may show less interest in what is happening around them.
• Their skin may change, such as hands and feet becoming cold,
changes in colour or some swelling.
• Their breathing may change. There may be long pauses
between breaths, breathing may become fast or slow, and
sometimes there may be a noisy sound caused by secretions.
These changes do not usually cause any discomfort to the person
who is dying. If you notice that your relative looks like they are in
pain or upset, please tell a member of staff. These changes may last
a few hours or can last for several days.

The last moments of life

For many people, the last moments of life can be calm. Their
breathing becomes slower and less regular, with longer pauses
between breaths. After a while, the breathing stops.

What happens after death

The dying person is usually calm and peaceful, though the moment
of passing can be very sad. You may wish to leave soon after, or you
may want to sit with your relative for some time, whatever feels right
for you is the right thing to do. Please ensure you tell the staff if you
or your relative have any religious or cultural needs that should be
addressed.
If your relative has died in the hospital they will be moved to the
hospital’s mortuary, where they will continue to be cared for. The
ward team will provide you with information about who to contact
and when, to enable you to register the death and make funeral
arrangements.
If your relative has died at home or in a care home, the district
nurses will advise you on the next steps, you will need to call them
to let them know about the death, and they will come to see you and
verify that your relative has died. Similarly in a nursing home, the
nurses will do the same.

Bereavement Support

You may have met the Swan Team if your relative has been in
hospital, if not you can call them to discuss bereavement support
options.
Telephone number is 01253 952456, available 7 days a week.

Communication and Notes

Please use this booklet to:
Advise us on what we need to consider when caring for:
............................................................................................................
(Please add name of the patient)
This is somewhere where you can write down information you
want to share or questions you want to ask with those involved in
providing care to the person named.
This booklet is one way we try to help communication between those
close to the person in the last days and hours of life and the health
and social care staff looking after them.
The Information you provide will help the care staff understand what
is important to the person they are caring for, as well as what is
important for you and others who are close to them.
Please use it if you wish to.
PLEASE NOTE
This booklet may be used by health professionals to record
information or messages in addition to discussions with you.
Please feel free to keep the booklet with you or available for the
staff to use.

Name:..........................................................................................................

Facilities if not at home
• You should be given information to help you stay with your loved one. This should cover:
• Visiting times, staying overnight, use of mobile phones, access to internet and email, etc.
• Food and beverages, bathrooms and toilet facilities
• Car parking and public transport

Name:..............................................................................................................................................

Information you should be made aware of
• When the person close to you is planned to be reviewed by medical and / or nursing teams
• A named member of staff who will keep you informed about changes in your loved ones condition (the member of staff may be different on different days)

Useful contact details

(Please enter the numbers that are helpful to you)

Other contact numbers that may be useful:

Community Care Co-ordination Service

Please ask if anything is not clear to you

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Author Bereavement Team 

Approved by EOL & Bereavement Care Group 

Date of Publication 01/11/2025

Reference No PL/866 (v4) 

Review Date 01/11/2028