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Preparing for the last days of life
This page has been designed to help you prepare for the end of someone’s life in hospital. This person may be a relative or friend or someone else who is important to you. Knowing what to expect at this difficult time can help you feel more prepared to support your relative/friend in their days or weeks or life.
The doctors and nurses looking after your relative/friend believe that there has been a change in their health which now sadly indicates that they are dying. It is important as healthcare professionals that we now understand any specific wishes that you or your relative/friend may have at this time.
This will help us create a personalised care plan and focus on prioritising comfort. We will aim to relieve symptoms and support to make decisions about eating and drinking and stopping other medical interventions. We will identify a named person for contact if ward staff identify a change in your relative/friend’s condition.
Please let the ward team know if you are happy to be contacted at any time should your relative/friend deteriorate, or if you would prefer not to be called at night or certain times of the day etc.
Care and compassion are essential in everything we do for your family member or friend, and we will work with you to ensure the best possible care.
We hope this leaflet will be helpful in explaining some of the changes we will make to your family member’s care plan to optimise symptom control and comfort as much as possible.
Medication and Treatment
It is likely that invasive treatment will be stopped and we will now switch our focus on treating symptoms and comfort care. Routine medication will be reviewed and anything that is no longer helpful may be stopped. New medications will be prescribed to help with symptoms such as dry mouth, pain, shortness of breath, agitation or nausea and vomiting should they arise.
If your friend/relative is no longer able to swallow these medications, they will need to be given via injection under the skin or in a small infusion pump called a syringe driver. These medications are tailored to every person individually to ensure we have the correct doses.
During the end-of-life phase, care will be focused to ensure the person is comfortable. It is likely routine ward tests will be stopped such as blood pressure monitoring, blood tests, intravenous antibiotics and intravenous fluids. Recognising and assessing indications that someone is in the last days of life can be complex, and sometimes people have ambiguous and conflicting signs and symptoms. People can show signs of recovery which may continue or be temporary. It is important we assess regularly to ensure the right care is being provided.
Please do let the ward team or the palliative care team know if you have any concerns or questions about this.
The use of subcutaneous (under the skin) medications:
When someone is approaching the end of life it is not unusual for them to lose the ability to swallow. At this point we will need to consider changing the way we administer medications.
These medications can be given subcutaneously (under the skin) via injection. They can also be given through a subcutaneous cannula to reduce the number of injections with needles. This cannula does not require finding a vein for insertion.
If a person is requiring a lot of medication to ensure their comfort, we may consider starting a slow sub-cutaneous infusion via a battery-operated pump called a syringe driver. This will slowly infuse over 24 hours and will be renewed on a daily basis. We will tailor the medications in the infusion uniquely to the needs of the individual person.
Medications for comfort at the end of life
Opioids
Opioids such as morphine or oxycodone as used at the end of life to help with pain and breathlessness. Opioids can sometimes cause constipation, nausea and dizziness. We will start with low doses and increase if needed.
Anti-agitation/anxiety
Medications such as midazolam, haloperidol or levomepromazine may be used to help the person with terminal agitation, anxiety or restlessness. These medications may make a person more drowsy or sleepy in higher doses.
Respiratory Secretions
A medication called Hyoscine butylbromide may be given to help dry up secretions accumulating in the back of throat/chest. This may not always improve symptoms if they are severe.
Nausea/Vomiting
A medication called haloperidol or cyclizine may be used if the person if feeling sick.
If you have any questions or concerns about these medications, please discuss with the doctors on the ward or the palliative care team.
Changes in Breathing
Towards the end-of-life breathing patterns can change. Some people can feel more breathless or short of breath. Some people experience this for many weeks, others just for the last days or hours of life.
Sometimes breathing is heavy and loud, sometimes it is shallow and quiet. There can be a noisy rattle in the last hours of life. This is due to a build-up of saliva and mucus in the throat or chest and a reduced ability to cough.
You may notice some long pauses in your relative/friend’s breathing. These pauses may follow with deeper or faster breathing patterns.
Medications can be given to try to reduce this noise and sometimes a change of position may help. This noise can be unsettling for you to hear but is often not distressing to the dying person.
What can you do to help?
- Breathing difficulties can be made worse with anxiety, knowing someone is close at hand may be reassuring.
- Desk or handheld fans are proved effective in helping breathlessness.
- If lips and mouth are dry, try moistening with a green sponge.
- Ask the nursing team about supplementary oxygen for comfort
- A more upright position or being or turning to one side in bed may help with noisy secretions.
Managing pain at the end of life
Not every person has pain at the end of their life, and this will vary depending on the person’s individual health needs and diagnosis. We will do all we can to try to treat the pain with medications available. We might not be able to take the pain away entirely but instead make it more manageable for the person to cope with.
When giving your friend/family member analgesia we will need to consider their kidney and liver function to ensure we are using the most appropriate analgesia that will have minimal risk of impairment on these organs.
Pain is different for every person, and we will talk through with you and your family member the best ways to manage the pain they are experiencing.
What can you do to help?
- Pain can be made worse with anxiety or stress, knowing that you are nearby may help reduce this stress and improve pain. Regular reassurance may be helpful
- Helping to re-position in bed to use pillows to provide comfort
- Distraction with conversation, music or reading may help the person to focus on something other than pain
- Escalating your worries to the nurses or doctors looking after your family member that day to let them know you feel they are struggling with pain.
- Any other techniques you may know of that will help the person to relax. Hand or foot massages, breathing exercises or meditation for example.
Hydration and Nutrition
Initially as the person becomes weaker, the effort of eating and drinking may become too much. A poor appetite may also be influenced by symptoms such as nausea and/or vomiting. When someone stops eating and drinking this can be very hard to accept.
Your relative/friend may not want nor need food/drink, and this is a common sign that someone is coming to the end of life. Their body is slowing down and needs less energy. It is likely they will be too sleepy or weak to swallow. If they are alert enough to drink and do not appear to be choking, then they should be supported to continue drinking as long as they wish.
What is clinically assisted hydration?
This is hydration through intravenous (into a vein) or under the skin infusion of fluids. This may be used to relieve dehydration or symptoms caused from medications.
When someone is dying, tube or drip feeding is unlikely to help them live longer or make them feel better, and sometimes it can cause other problems such as nausea, bloating, swelling in limbs and chest secretions. It is uncertain if not giving hydration will hasten death.
Clinically assisted hydration is not routinely used at the end of life as this can cause other symptoms which are difficult to reverse.
However, in some people it is appropriate and this depends on their medical needs. We will need to consider if hydration will benefit or potentially harm the person. If you have questions around this, please talk to the ward team or the palliative care team for more information to discuss the risks and benefits.
What can you do to help?
- If your relative/friend tells you they want to eat and drink, we recommend following their lead.
- Offer them small amounts without pushing, ensure they are sat up and not too drowsy. Try to accept that they may not want the food or drink. Sometimes as they become weaker the swallow also weakens there is a risk food and drink may be aspirated into the lungs. We may accept this risk as we appreciate that food and drink do have an impact on quality of life and would not wish to deny someone of comfort in their last days of life.
- If the person is unconscious, we advise to not put anything in their mouth.
- Some people prefer an ice lolly or ice chips to suck on rather than drink.
- Moisten their mouth with liquid, use a green sponge or a soft toothbrush – If unsure of how to do this please do not hesitate to ask a member of staff for help.
- Ask about artificial saliva or mouth gels to prevent dry mouth.
Restlessness or agitation
It is not uncommon to see signs of distress, delirium or agitation in the last days of life, this is otherwise known as terminal agitation.
Terminal agitation at the end of life can look different in each person it affects. It may appear as confusion, agitation, anger, pulling and tugging and bedsheets or clothing, hallucinations or disorientation.
Sometimes there are reversible causes of agitation and if a person is unable to communicate their needs, we may need to consider other causes such as urinary retention, constipation, positioning, temperature and even noise that can be treated to relieve the distress.
We will also ensure analgesia is prescribed.
The palliative care team can help to advise on medications to help relax or calm your relative/friend.
What can you do to help?
- Talk with them and reassure them, be sure to speak clearly and calmly.
- Remind them of who you are and where they are, let them know the time of day
- Try to keep their surroundings calm and quiet if possible
- Play some of their favourite music
- Try not to get agitated in return
- Let the nurses know they are agitated and ask if medication is available to help
- You know your relative/friend better than anyone, please do let us know if there are ways we might be able to make them more comfortable.
Religious and Spiritual Needs
It is important that we individualise your relative/friend’s care and when considering their needs we need to know if they follow a particular faith or religion and how we might adhere to special needs or practices at the time of death or after death.
Not everyone who dies has a formal religious tradition, but the staff would be happy to explore any other values, beliefs, wishes or desires that are important at this time.
We may also ask about what was important to your relative/friend other than religion to support spiritual needs.
We have an excellent chaplaincy team who will be happy to visit your relative/friend on the ward for ongoing support.
What to expect in the last hours of life
Your relative/friend will start to withdraw from the world. This is a gradual process, and they may spend more time sleeping and will often be drowsy when awake.
When death is close, breathing may change with longer pauses between breaths, the skin may become pale and may be cool to touch. Most people do not rouse from sleep and are at this point mostly unconscious or not aware of their surroundings.
When a person dies, they may suddenly relax and seem peaceful and their breathing will stop. If you think your relative/friend has died, please speak to a healthcare professional on the ward so that a doctor may be called to verify the death. Please take your time to say goodbye. Losing someone you love and care for is difficult and painful, and it is often hard to know what to say to each other at a time like this. Just being there provides great comfort. Nurses, doctors and other staff are there to help you to work through your worries and concerns and to offer you care and support.
End of life care companions
We know that you can’t always be in the hospital to be with your relative/friend at all times.
End of life care companions are volunteers that are available from 08:00—20:00 to sit and be a companion to your relative/friend if you are unable to or need a break. Please ask if you would like the nursing staff to arrange for a companion.
Facilities
You should be given information with regards to facilities on the ward, e.g. visiting times, car parking and beverage facilities and toilets.
There are a restaurant and cafe within the hospital serving with hot and cold food and a small shop at the main entrance
At the end of life, you can visit 24 hours a day, but we do ask that you also get some rest where you are able to. Please speak to the ward nurses if you wish to stay overnight as we need to ensure your safety.
Parking is free to close family member who are visiting people in the last days of life. Please speak to your ward nurse about this.
After your relative/friend has died
Initially please take your time to say goodbye. A doctor or qualified practitioner will come to the ward to verify the death. The ward staff will kindly give you a bereavement booklet with more information. When you are ready to leave, please take your relative/friend’s belongings with you.
The nurses will then gently prepare the body to be taken to the hospital mortuary.
Please let ward staff know in advance if you have any specific requirements or religious practices after death.
We ask that you contact the bereavement office a few days later to discuss the certificates and paperwork as needed, they will advise on how to register the death and the next steps from here.
Useful Contact Numbers:
| Palliative Care Teams | Frimley Park 0300 613 6755 Wexham Park 0300 615 4879 |
| Patient Advisory and Liaison Service | 0300 613 6530 |
|
Bereavement Team Monday to Friday10am to 4pm |
Frimley Park and Farnham Hospital 0300 613 4193 Wexham Park and Heatherwood Hospital 0300 615 3562 |
| Bereavement Advice Centre—Charity | 0800 634 9494 |
| Cruse Bereavement Care—Charity | 0808 808 1677 |
| Child Bereavement UK | 0800 02 888 40 |
Contact us
If you have any queries relating to this information, please contact the Palliative care service.
About this information
Service:
Palliative care
Reference:
NN/005
Approval date:
1 December 2024
Review date:
1 December 2026
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Important note
This page provides general information only. It is developed by clinical staff and is reviewed regularly every 3 years for accuracy. For personal advice about your health, or if you have any concerns, please speak to your doctor.