Care in the last days of life

The team may offer a SWAN symbol to be placed on the door or curtain where your loved one is being cared for. It informs the wider team that this is a sensitive time for you and your loved one. This also enables staff to provide more flexible, sensitive and informed care to support your needs. It will only be used with your consent.

When a person is dying, it is very important that we provide care according to their individual needs and wishes. Some people may have thought a lot about how they want to be cared for in their last days of life. If they have shared these wishes with you, it is important that you discuss these with the team looking after your loved one. Even if they haven’t, you can tell us what you think their wishes may be.

Below are some things that patients, their relatives and friends often describe as important.

If you would like to stay in the hospital with your relative or friend, please discuss this with the nurses. They will tell you about the facilities available.

Some people have a clear idea of where they want to spend their last days. Some would prefer to die at home; others prefer to stay in a hospital or a hospice.

These thoughts may change over time. Some people may be too unwell to be moved from hospital. We will do our best to accommodate individual wishes and will talk to you about what is practical.

When someone enters the last few days of life, they often lose interest in food and drink. It can be hard to sit by when a loved one stops eating and drinking but this is a normal part of the dying process. We will help your loved one to eat and drink for as long as they want to. If they are no longer able to drink, we will keep their mouth moist and clean to help with their comfort. If you would like to do this for your loved one, the nurses can show you how.

Where appropriate we can give fluid by a drip but this can have side effects. Fluid can build up in the wrong places, such as the lungs making it harder to breathe. The medical team will talk to your loved one and to you about what is best for them.

When a person is dying, doctors review their medications to ensure that they remain helpful.

Some medications may be stopped. If medications are necessary and your loved one is unable to take them as tablets, they may be given as injections instead.

Many people are fearful that pain worsens in the dying phase, but this does not usually happen. You may notice a change in your loved one’s breathing pattern. A range of medications can be prescribed and given if needed. These are used to treat troublesome symptoms, such as pain or breathlessness.

A device called a syringe driver is used if your loved one needs a continuous infusion of medications to help control symptoms.

We want to disturb your loved one as little as possible, so we may stop any unnecessary tests and observations, such as blood pressure monitoring or blood tests. Regular repositioning of your loved one will continue for their comfort and with the aim of preventing pressure ulcers from developing.

When someone is dying it is quite normal for their condition to vary from day to day, or even hour to hour. Often people become drowsy and spend much of their time sleeping. Even if they appear to be sleeping, they may still be aware of your presence, your voice, and your touch.

The nurses and doctors will do everything they can to make sure that your loved one is comfortable. Please let us know if there is something else that you believe may give comfort to your loved one, such as music.

If they appear to be restless, the team looking after them can help with this by addressing the cause and using medication as needed.

If you are worried that your loved one seems distressed or has uncomfortable symptoms, please use the nurse call bell or tell one of the doctors. If there is anything we can do to support you, please let us know and we will do our best to help.

At such a sensitive time you may wish to be involved in a practical way. If you feel able to take part in giving care, for example by providing mouth care, our teams will support you to do this.

Your loved one may follow a religious tradition or belief or have other spiritual needs. If you or your loved one would like to see one of our chaplains, who are from a variety of faith traditions, please talk to one of the nurses or doctors and they will try to arrange this.

Everyone is welcome to use our chaplaincy services:

University College Hospital
The multi-faith chaplaincy centre is located on the ground floor podium.

National Hospital for Neurology and Neurosurgery
The chapel with multi-faith facilities is located in the Albany Wing.

University College Hospital at Westmoreland Street
The multi-faith room is located opposite the main reception.

University College Hospital Grafton Way Building
The prayer room and the oasis room are located on the ground floor.

They are all open 24/7 for private prayer and quiet reflection.

Regular services also take place. Details available in the chaplaincy.

Your loved one may be on the organ donor register or discussed registering to become an organ or tissue donor. We realise that this can be a difficult time for you to think about this.

Organ donation can take place from a limited number of people who die within a critical care environment, whilst on advanced respiratory support, including a ventilator. The medical team will ensure specialist nurses are present to talk to you if your relative dies in a way which means they could potentially donate their organs. The specialist nurse will be present for the ongoing support of both you and your relative(s).

Tissue donation can occur after death from the mortuary, with the best time for this being within 24 to 48 hours after someone has died. Organ and tissue donation is always completed with the upmost dignity and care and conducted with the same respect attributed to any operation or procedure. Donation does not incur any costs nor prevent relatives from saying goodbye or affect funeral arrangements. If tissue donation is something you would like to consider on behalf of your loved one, please speak to the clinical team, or call the National Referral Centre for Tissue Services 0800 432 0559.

We will ask for your contact details, as keeping you up to date is very important to us. If there are times when you would prefer not to be contacted, please let us know.

You can also contact us by calling the hospital switchboard and asking for the relevant ward or calling the ward. Please ask the team looking after your loved one for the ward contact number.

UCLH switchboard: 020 3456 7890

(or 0845 155 5000 – this is a premium rate number; please check your operator charges)

We understand that this may all be very unfamiliar to you, and we are here to explain, support and care.

If you have any questions or you would like to speak to a member of the team caring for your loved one, please ask a member of staff.

If you have any concerns that you would like to discuss in confidence, please contact our PALS (Patient Advice and Liaison Service) for information and advice.
Email: uclh.pals@nhs.net
Telephone: 020 3447 3042
Website: find out more
 

If you would like to provide information about your experience, please complete this survey.

If you have any questions in relation to this survey, or require any help in completing the questionnaire, then please contact the Transforming End of Life Care Team on 0203 4477 842 or email uclh.transformingeolcteam@nhs.net.

UCLH Charity is here to make a difference to patients, staff and research at University College London Hospitals.

To find out more about our work, and how you can support us, please visit our website.