Care in the last days of life

Introduction

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 it 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. At our Trust we have a care plan called the Compassionate Care Agreement. We will involve your relative or friend in the development of this plan, when possible, and discuss it with you. The Palliative Care team may be contacted to further support a person in the last days of their life, but this is not always necessary.

Please ask any questions, no matter how insignificant you think they may be.

The last days of life

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. The palliative care team may also be involved.

Everyone is different, so it’s not possible to say exactly what will happen when someone approaches the end of their life. But in the last weeks and days before death, it’s common to experience certain changes. Below are some things that patients, their relatives and friends often have questions about.

Place of care

Some people have a clear idea of where they want to spend their last days. Some would prefer to die at home or in their nursing 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. If your relative or friend wants to stay in hospital, it may be they would prefer to be in a single room. Please discuss this with the doctors and nurses—it is not always possible, but they will do what they can to accommodate this wish.

Eating and drinking less

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. 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.

Medications and tests

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 pump is used if your relative or friend needs a continuous infusion of medications to help control symptoms.

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.

Changes in breathing

You may notice changes in the pattern of your relative or friend’s breathing in the last days and hours of life. It can become more laboured, or their breaths have a pattern where they become more rapid, then slow right down with long pauses in between breaths.

Their breathing can become noisy and make a rattling sound. The rattling sound is caused by a build-up of fluid at the back of their throat. Although this can be distressing to hear when sitting with someone it does not usually cause any discomfort or distress to the person. Sometimes propping their head up on a pillow and turning it to one side may help. The nurses may give some medication to help dry up the secretions.

Pain

Many people are fearful that pain worsens in the dying phase but this is very rarely the case. The doctors and nurses will review this regularly and will ensure that medication is available to relieve any pain that your relative or friend may have.

Restlessness and agitation

Sometimes people can become restless or agitated shortly before their death. The doctor or nurse looking after them can help with this by addressing the cause and making sure they have the medication they need to ensure that they are not in pain, anxious or frightened.

Comfort and support

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 you are worried at any time that your relative or friend seems distressed or that they are uncomfortable, please let one of the nurses or doctors know. 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.

Visiting your relative or friend

We encourage you to visit your relative or friend as much as you want to.

Please discuss visiting times and your individual needs with the nurses on the ward. Children are also welcome to visit. If you feel unsure about this, discuss it with the nursing staff.

You may wish to stay with your relative or friend overnight—please discuss this with a member of staff on the ward. They will tell you about the facilities available.

Visiting can be very tiring. It is understandable to be worried and to feel helpless at this time but it is important to take care of yourself. Try to rest as often as possible and eat sensibly. We suggest if you are visiting with other friends or family that you consider taking it in turn to be at the bedside.

The chaplaincy team

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 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.

Chelsea and Westminster Hospital

The sanctuary and the chapel are on the 1st Floor, between Lift Banks B and C. The tent (prayer room) and ablution facilities are located on the 4th Floor between Lift Banks C & D.

West Middlesex University Hospital

The multi-faith chaplaincy centre is located in the main hospital atrium, opposite pharmacy. They are open at all times for private prayer and quiet reflection. Regular services also take place.

The Mulberry Centre is available for practical and emotional support to all West Middlesex University Hospital inpatients and their relatives. It is a quiet and peaceful space, both indoors and out. Please ask the nurses on the ward for further information and directions.

What happens immediately after someone dies?

Even though you know the person is dying and you can try to prepare yourself, it is hard to know how you might feel when they actually die. Some people feel shocked or numb, while other people might feel overwhelmed with sadness or even anger. It is also normal, particularly if it has been a long illness, to feel a huge relief. You may find it helps if you have already thought of someone you can call who can be with you to support you at this time.

After the death we would encourage you to spend time with your relative or friend if you would like to do so. Although this is likely to be a very emotional time, there are still some formal things that need to happen. The first is confirming that the person has died. This is called verifying the death. Once the death has been verified, the nurses who have been caring for your relative or friend will prepare their body to be taken to the hospital mortuary. If you wish to be part of this process, please inform the nurse in charge.

You will be given a copy of the Trust’s bereavement booklet Information for families after a bereavement. This booklet is a practical guide on what do after death and provides further information and advice about the next steps and support available.

Practical issues

Keeping in touch with the ward

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 by calling the ward directly. Please ask the team looking after your relative or friend for the ward contact number.

Chelsea and Westminster Hospital: 020 3315 8000
West Middlesex University Hospital: 020 8560 2121

Parking

Close relatives of the patient may be eligible for concessionary parking rates. Please ask the nursing staff about this.

Meals and refreshments

The restaurant at Chelsea and Westminster Hospital can be found on the Lower Ground Floor between Lift Banks C and D. There is also a coffee shop on the Ground Floor of the hospital. The coffee shop is open 24 hours.

At West Middlesex University Hospital, there is a coffee shop in the atrium of the main building and a larger restaurant, Rumbles, on the Ground Floor of the East Wing building. There is also an M&S Simply Food and a WHSmith which sell food and snacks. These facilities are not open overnight.

Toilet facilities

There are several public toilets located on the Ground Floors of each hospital. However, you may not wish to leave the ward so please ask a nurse on the ward for access to nearby facilities.

Tell us what you think

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 Patient Advice and Liaison Service (PALS) for information and advice.