This information has been provided to support patients and their relatives discharged from Yeovil hospital for end of life care.

It can be a very sad and frightening time when you learn that you are in the last days of your life, or someone close to you is gravely ill. We hope you find the following information useful and supportive for you following your discharge from Yeovil hospital.

Care at home in the last days of life

The healthcare professionals caring for you and your loved ones will work closely with you to develop an individual care plan to support you and your family.  Staff will focus on keeping you comfortable and controlling your symptoms.

The community nursing will develop a care plan to support you as much as reasonably possible to remain at home.

Medication

At your end of life the medical team will review the medications that are needed to support you. It may be that some medications are stopped as they will provide little to no benefit. We aim to use medications to control symptoms as and when needed.

If you feel your loved one is agitated or in pain you will need to contact your district nurse on the numbers provided to you, or by contacting your GP surgery or out of hours GP service by calling NHS 111. Should it become difficult to control symptoms or they become more frequent the doctors and nurses may commence a syringe drive which will deliver any needed medication continuously over the 24 hour period.

We have discharged you home with ‘just in case medications’ please place these in a safe place with the drug chart, and any other paperwork you have been discharged home with, your health professional will ask for these as and when needed.

Things you can do to support your loved one

  • Mouth care/oral care – It is advisable for thorough mouth care to be provided by using a soft toothbrush with cold water and gently cleaning of the teeth and tongue to ensure they don’t dry out and to maintain comfort and reduce the feeling of thirst that often occurs when individuals breath through their mouth.
  • Comfort in one position – Your loved one will often find lying in one position for long periods of time comfortable. If they appear comfortable in one position, to move them may cause them unnecessary distress. If you have care staff visiting, during their visit they will assist the patient into another position and aim to reduce the risk of skin damage as much as possible. Should you feel the need to alter the position, as a general rule if you would be comfortable in this position, then your loved one is also likely to be comfortable.
  • Talking – It is thought that one of the last senses to diminish is a person’s hearing. Therefore talking to your loved one and letting them know someone is with them is often very comforting for them. Listening to music you know they like can also be relaxing for them.

During the days approaching a person passing away there are a number of changes that will take place but this is very different for each individual. Should you have any questions you should speak with the patient’s GP or community nursing team.

These are some of the more common changes you may notice:

Changes in breathing

Breathing may become loud and noisy if a lot of mucous has built up in the lungs and airways. It’s not a medical term but some people call this the ‘death rattle’. You may find some of the breathing patterns alarming or distressing but they generally don’t cause any discomfort or distress to the individual.

As the moment of death comes nearer, breathing usually slows down and becomes irregular. It might stop and then start again or there might be long pauses between breaths. This can happen quickly, or it can take a long time before breathing finally stops.

Food and drink

At the end of life the need for food and drink diminishes and is likely to not be needed in the last days of life. Mouth care can be provided as recommended above to ensure comfort. It is often not clinically indicated for individuals in the terminal phase of life to have artificial fluids administered. A person’s need for food and fluid in the last days of life will decrease and stop, this is often more distressing for loved ones and does not cause discomfort for the individual.

Loss of consciousness

Most people lose consciousness near the end of their life. But there may still be some awareness of other people in the room, and hearing what’s being said. This can be a good time to say some last words to relatives or friends and hold their hand.

Skin

The skin can change colour and limbs, hands and feet may feel colder, because the blood circulation is slowing down.

It is likely that your care package has been organised and funded by the NHS Continuing Healthcare Fast-Track funding. This funding process has previously been explained to you by the hospital discharge team. This funding is for 12 weeks and is open to a continuous review process. Should your condition improve this funding may be reviewed (you will be informed of this shortly after your discharge from hospital will a letter explaining the date and time this review will take place).

Should you have any problems with your care package please call Somerset care co-ordination centre on 01749 836550 who will be able to support you.

Contact the on-call doctor for verification

At the time of death this is often a very stressful time for everyone involved however, certain processes do need to be followed.  During standard “work” hours (usually Monday to Friday 9am-5pm) it is advised that the on-call doctor from your own surgery is contacted to come and verify the death. Out of hours you will need to contact the NHS 111 service and ask for an on-call doctor to come and verify an expected death.

The doctor will ask to see the last hospital discharge summary and any other paperwork you had when you left the hospital.

It is important to note that this can at times take a few hours.

Contact funeral director

It is also important you contact the chosen funeral directors to arrange collection of your loved one. They will also guide you through the next stages and process that need to be followed.

Hospice 24 hour number – 0845 070 8910

Should you have any problems with your care package please call Somerset care co-ordination centre on 01749 836550 who will be able to support you.

For all out of hour’s services and advice that may need a community service to visit please call NHS 111 advise the call handler that the individual you are calling about has been placed on the end of life care register this will allow them access to your details.

Ref: 12-17-129
Review: 11/19