Care in the last days of life - Information for family, friends and carers

This leaflet explains more about how we care for somebody when we believe they are in the last days of life. We understand that this is a difficult time and hope that this leaflet will help answer some of the questions you may have.

If the nurses and doctors looking after your relative or friend are concerned that they are in the last days of life, they will talk to you about the care your relative or friend will receive. You may already have known for some time that they may be dying. Or the news may come as a great shock.

Our medical and nursing teams are committed to caring for your relative or friend with compassion and dignity, and in a manner which is respectful of their expressed wishes.

The doctors and nurses looking after your relative or friend will develop a personal care plan to ensure that they receive the best care in their last days of life. This care plan is called ‘Excellent Care in Last Days of Life’. We will involve your relative or friend in the development of this plan, where possible, and discuss it with you.

Please ask any questions, no matter how insignificant you think they may be or how busy the staff may seem.

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. They may have shared these wishes with you. If so, it is very important that you discuss these with the doctors and nurses looking after your relative or friend.

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

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. The doctors and nurses will do their 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. This is a normal part of the dying process. But it can be hard to sit by when a loved one stops eating and drinking, even when we know they are dying.

We will help your relative or friend to eat and drink for as long as they are able and want to. If they are no longer able to drink, we may consider giving fluids by a drip, either directly into a vein or under the skin. Fluids can be helpful but can also have side effects. They can build up in the wrong places, such as the lungs, and cause difficulty in breathing. The medical team will aim to get this balance right. They will talk to your relative or friend and to you about what is best for them.

Keeping the mouth clean and fresh is very important for comfort and is usually done using small sponges on a stick. The nurses can show you how to do this if you would like to be involved.

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 relative or friend is unable to take them by mouth, they may be given by injection instead.

A range of medications can be prescribed to be given if and when the need arises. These are usually used to treat any troublesome symptoms, such as pain or breathing difficulties.

Sometimes a device called a syringe driver is used if your relative or friend needs a continuous infusion of medications to help control symptoms.

Many people are fearful that pain worsens in the dying phase but this is very rarely the case. You may notice changes in breathing, which are not unusual. Medication can help to ease these, if they cause distress.

We want to disturb your relative or friend 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 comfort and also with the aim to prevent 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 relative or friend is comfortable. 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 at any time that your relative or friend seems distressed or that they have 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 giving drinks or moistening the mouth, our teams will support you to do this.

Your relative or friend may follow a religious tradition or belief, or have other spiritual needs. If you or your relative or friend would like to see the Anglican Chaplain or a representative of another Christian denomination or faith, please ask a Nurse to contact the appropriate person listed on the religious directory.

The Faith Centre is located in front of the Jubilee Rehabilitation ward. Everyone is welcome to use our Chaplaincy service.

We will ask for your contact details, as keeping you up to date is very important to us.

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

RNOH switchboard: 020 3947 0100

If there are times when you would prefer not to be contacted, please let us know.

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.

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

We hope that you have found this leaflet helpful.

If you have any questions or you would like to speak to a member of the team caring for your relative or friend, 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.
Telephone: 020 8909 5439