The nurses and doctors looking after your relative or friend believe that there has been a change in their condition that indicates that they may be dying. We want to provide care in a way that respects the dignity, privacy, choice and confidentiality of each person, their relatives and carers.
The dying experience is unique to each person.
The health care professional’s aim is to achieve the best quality of care and comfort at the end of their life, wherever your relative or friend is dying - at home, in a care home, in hospital or in a hospice.
To keep you fully informed, you will be involved in discussions regarding the plan of care, with the aim that you fully understand the reasons why decisions are being made.
All care and decisions will be reviewed regularly by the care team. Please feel free to ask staff any questions that you may have at any time. Relatives and carers will be asked who to contact in the event of a change in your relative or friend’s condition.
Facilities
If your relative or friend is being cared for in a hospital, care home or hospice, you should be given information about facilities for your comfort e.g. visiting arrangements, car parking, refreshments, toilet and bathroom facilities.
Medication and procedures
Medication will be reviewed and any medicines that are not helpful at this time will be stopped. New medication may be prescribed to help control symptoms, and will only be given if needed.
It may not be possible to give medication by mouth at this time, so medication may be given by injection or, if needed, by a pump called a syringe driver.
At this time, it is usually not appropriate to continue some procedures, e.g. taking blood, blood pressure and temperature monitoring.
Spiritual, cultural and faith needs
Your relative or friend and you will be given the opportunity to discuss what is important to you all at this time regarding wishes, feelings, faith, beliefs and values. If needed, there is support available from a chaplain or religious advisor now and when your relative or friend dies.
Comfort
Your relative or friend may need to stay in bed more. They may find it difficult to get comfortable or change position and may need help to do this. Although your loved one may look comfortable and you may not want them to be disturbed, it is important that they do not remain in one position for a long time. Their skin can become sore or numb and it may break down into a pressure ulcer (bed sore). We will help them to change position regularly to prevent them developing pressure damage. We may also apply barrier products to protect their skin or provide a special mattress to aid comfort.
At this time, the comfort of your relative or friend is of the highest importance. The nurses and doctors will provide comfort measures with minimum disturbance to your relative or friend. Please let us know if you feel any of their needs are not being met.
You remain an important part of your relative or friend’s care, and your continued involvement is welcomed.
Reduced need for food and drink
Loss of interest in, and reduced need for, food and drink is part of the normal dying process. When a person stops eating and drinking, it can be hard to accept even when we know they are dying. Your relative or friend will be supported to eat and drink for as long as they want.
Symptoms of thirst or a dry mouth usually do not indicate dehydration, but are often due to medication or breathing through the mouth. Mouth care is very important at this time. If you would like to share this care, the nurses can explain to you how mouth care is given.
If your relative or friend cannot take fluids by mouth, very occasionally and in certain circumstances, fluids may be given by a drip. However, this will only be used where it is helpful and not harmful. This decision will be explained to them, if possible, and to you.
Taste for Pleasure
It is a natural and expected part of the dying process for patients to become sleepier for longer periods and to eventually stop eating and drinking. When this happens, mouth care should be given more often.
Mouth care is more than just brushing teeth. It is cleaning and moistening all parts of the mouth, teeth (if present) and all of the soft tissues (lips, tongue, cheeks).
”Taste for Pleasure” means providing mouth care with a Patient’s favourite flavours to provide moisture. This can include anything from tea, coffee and Bovril to orange squash or even Prosecco. Link to Taste for pleasure leaflet
Physical changes at the end of life
As time goes by, your relative or friend will become drowsy and spend more time sleeping.
Their breathing pattern will change and often becomes irregular and noisy. Medication may be given to reduce noisy breathing, and changes to position may also help. Whilst you may find this upsetting, it often does not distress the dying person.
Over time, their sleep will become deeper and eventually they will be unable to be woken. Their skin may become pale and cool prior to death. Most people do not awaken, and die peacefully and comfortably.
Caring well for your relative or friend is important to us. Please ask if there are any questions that occur to you, no matter how insignificant you think they may be or how busy the staff may seem. This may all be very unfamiliar to you and we are here to explain, support and care.
Confidentiality
‘The Trust’s vision is to keep your information safe in our hands.’ We promise to use your information fairly and legally, and in-line with local and national policies. You have a right to understand how your information is used and you can request a copy of the information we hold about you at any time.
For further information on confidentiality contact the Information Governance Team:
Information.Governance@ncic.nhs.uk | 01228 603961
Feedback
We appreciate and encourage feedback, which helps us to improve our services. If you have any comments, compliments or concerns to make about your care, please contact the Patient, Advice & Liaison Service:
pals@ncic.nhs.uk | 01228 814008 or 01946 523818
If you would like to raise a complaint regarding your care, please contact the Complaints Department:
complaints@ncic.nhs.uk | 01228 936302