When someone is dying Information for Relatives and Carers This leaflet can be made available in other formats including large print, CD and Braille, and in languages other than English, upon request.
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Caring for your relative or friend towards the end of their life is one of the most difficult times you will ever have to deal with. We are here to support and help you through this very difficult time. This leaflet will help you to understand some of the changes which happen before death, the care provided by healthcare professionals and how they can help. Some people will want to know what to expect when someone close to them is dying. Not everyone will wish to have these details and it is alright to choose not to read this information. You may find it helpful to talk to one of the healthcare professionals involved in caring for your relative or friend. They will do their best to answer any questions you may have. What will happen when my relative or friend is nearing death? He or she may have talked about how they wish to be cared for should they not be able to speak for themselves in the future. This may include where they wish to die. If his or her wishes have been discussed or written down in advance, these will be followed where possible. When the healthcare team recognise the signs of dying they will then approach the subject gently with the patient if they wish to know: that your relative or friend is dying why investigations such as blood tests and x-rays are no longer useful why treatments which are no longer helping may be stopped, for example intravenous fluids or antibiotics. 1
The healthcare team will continue to do all they can to make your relative or friend as comfortable as possible. A doctor or nurse may suggest they start to use the Caring for the Dying Patient document. How do healthcare professionals, for example, doctors or nurses know someone is dying? It is not always possible for healthcare professionals to give an exact time when the person may die. However, when someone with a severe illness is nearing the end of their life there are some signs which suggest death may be close. These include: not wanting to eat or drink becoming gradually more tired and lacking energy appearing confused or agitated (restless) changes in the way they are breathing. If someone isn t drinking, won t they die of dehydration? When someone is dying, they can lose interest in food and drink. As the body becomes weaker there is less need for fluids. It is important to understand it is natural for the body s system to shut down. If a patient is given fluid by mouth, it may go down the wrong way and make them cough, splutter and feel like they are choking. What can I do to help if my relative or friend has a dry mouth? A nurse will help you decide what is safe for your loved one. You can help by keeping his or her mouth moist by using special saliva sprays, gels or a pack of damp mouth sponges, the nurses can give you these. If your relative or friend has a dry mouth this does not mean they are thirsty. 2
You may carry on offering small amounts of food or sips of water unless you are advised not to. Ice lollies may sometimes be easier to manage than trying to drink. A patient who wants to drink would not be stopped from doing so, unless they are unable to understand the risks and benefits. Can my relative or friend have a drip? The decision about starting and stopping a drip rests with the senior doctor caring for the patient. The patient s family will be informed of any decisions and they will always be made in the best interests of the patient. These decisions can be very difficult and need to be made for each patient individually. In most cases there is no evidence that a drip helps with comfort. Occasionally a drip is used. Fluid is given through a small needle under the skin. The drip needs to be reviewed by a doctor every 24 48 hours. It is important to assess (check) whether or not a drip is helping the patient or causing more symptoms and making them uncomfortable.in the last few hours of life, the body is unable to cope with fluids and the body can become overloaded with fluid, causing chestiness or noisy breathing. The patient s arms and legs can become swollen, as the body is unable to use the fluid, this may cause more discomfort for the patient. It may be necessary to consider a catheter (a fine tube) to help pass urine if they are unable to get up to use the toilet. If the patient develops difficulty swallowing tablets, arrangements can be made for these to be given by injection or a syringe driver. A syringe driver is a small machine which gives medication continuously, under the skin, through a fine plastic tube inserted into the arm, abdomen or upper leg. The drugs are absorbed from the skin into the bloodstream. 3
How will my relative or friend feel? In the last few days of life, your relative may start to spend more and more time asleep. When they are feeling very tired or weak, they may not have the energy to talk to you. You may find this upsetting but it is important to continue to give comfort by being near them, holding their hand and continuing to talk to them as you would normally. In the last few hours or days, your relative may sleep most or all of the time and may become unconscious. Confusion or agitation As your relative or friend is drifting in and out of consciousness, they may appear confused or to not recognise you or other people who are important to them. If your relative or friend becomes agitated or distressed, medication can be given. Changes in the way they are breathing People often worry they will die fighting for breath. However, towards the end of life people become less active and their bodies use less oxygen. Sometimes a noisy rattle can develop. This is due to a build up of mucus which is not coughed up. Noisy breathing is upsetting to relatives and friends but does not seem to distress the dying person. This can be helped by using medication or a change of position. When death is very close (within a few hours or minutes) the breathing pattern can change. Sometimes there can be long pauses between breaths or their abdominal muscles take over the breathing. The abdomen, rather than the chest, rises and falls with each breath. Breathing can appear to become laboured but this does not seem to distress the dying person. 4
Other signs that death may be close The person s skin can become very pale with a blue tinge, moist and slightly cool just before they die. Most people seem to fall asleep and die peacefully, comfortably and quietly. What is the document Caring for the Dying Patient? A senior doctor will be responsible for your relative or friend s care. In their own home this will be a GP and in the hospital a consultant. The Caring for the Dying Patient document is a guide used when caring for someone in their last days of life.it is used to make sure the best possible care is given, to document important conversations, to guide the use of medication to control symptoms and to monitor ongoing care. It aims to make sure they have as peaceful and comfortable a death as possible. It can be used no matter what the person s illness or diagnosis and whether they are in their own home, hospital, hospice or care home. The doctors and nurses will try to find out and provide for: the patient s wishes, desires, values and beliefs the patient s preferred place of care. If this is their own home, every effort will be made to discharge them from hospital or hospice as quickly as possible. This may not always be possible as transferring the patient could increase their discomfort. They will make sure all the care and support needed is available, for example, nursing care and Marie Curie support if needed the needs of relatives and friends. They will keep you informed about the dying person s condition. They will also help prepare you for coping with your grief. 5
At all times the best interest of the patient will be taken into account. This may mean a senior doctor decides to complete a Do not attempt cardiopulmonary resuscitation order (DNACPR) before the dying phase. This means no attempt will be made to restart their heart or breathing. This is a difficult time for everybody and it can be helpful to talk about worries and concerns either to the family or a healthcare professional. If the patient is dying in their own home, it is sometimes helpful for family members to plan visiting on a rota basis to keep the environment calm for the patient and close family members. In rare cases the patient s condition will improve. It is important they are reviewed regularly by healthcare professionals so their treatment can be changed as needed. Any changes will be shared with family and friends. What can I do to help? As a relative or friend, just being there will help. You can stay with the patient as long as you wish in either the hospital or the hospice. Healthcare staff will visit regularly to see if there is anything they can do to help make the patient comfortable. They will also support and help relatives and friends. It is impossible to give an exact time when someone will die. Dying can take a few days or can happen very quickly. Relatives and friends often wonder how they can help during this time. You can be involved in the patient s care if you wish, for example, washing hands and face, combing hair and keeping their mouth clean and moist. Even if the patient seems to be unconscious it is possible they can still hear what you are saying. You may want to talk as if he or she can hear you. 6
While caring for your relative or friend it is important you also take care of yourself and take time to eat and rest. One of the nurses will explain what facilities are available in the hospice or hospital, for example, meals, drinks, washing, or sleeping near to your relative if you do not wish to go home. What spiritual or religious support is available? Chaplains work in hospitals and the community to provide for the spiritual and religious needs of patients, relatives and visitors. They provide a 24 hour on call service. Chaplains can offer support and comfort not only to the dying person, but also to relatives and friends, before death, at the time of death and afterwards. Prayer and worship can help some people. This can include Prayers of Commendation and Blessings. Chaplains: are available to people of all faiths and those with no religion, faith or beliefs are happy to meet with anyone who needs someone to talk to can provide links with leaders of other faiths. If the patient, relatives or friends would like to see their faith leader or a chaplain, please ask a nurse to arrange whether in hospital, hospice or community. The hospital chapels are open every day for anyone to use for times of quiet thought or private prayer. They also have facilities for prayer and cleansing for multi-faith use. Please ask if you would like a copy of our leaflet The Hospital Chaplaincy Team for further information. 7
What should I do when death happens? If you think the patient has died you should let a doctor or nurse know. Relatives and friends may be asked to leave the room when the doctor comes to verify death but this will be done as sensitively as possible. You will be allowed back into the room as soon as possible to pay your last respects. You can stay as long as you wish. At home the doctor or a nurse must still be called to verify death so the undertaker can be contacted to arrange for the person s body to be removed. If you have any worries or concerns you should contact your GP during normal surgery hours. Outside surgery hours you should contact your GP s surgery for the Out of Hours Service number. Other information leaflets are available to advise you on the practical aspects of what to do after the death. You may find Practical help and advice after a death: What do we do next? and What to do after a death in England and Wales leaflets helpful. There are also other leaflets available to help support bereaved relatives and friends. These can be provided by health professionals caring for the patient. Contact numbers If you need further advice, or have any problems, please contact: University Hospital of North Tees Specialist Palliative Care Team telephone: 01642 383895 Monday Friday, 9.00 am 5.00 pm District Nursing Single Point of Access telephone: 01429 522500 8
University Hospital of Hartlepool Specialist Palliative Care Team telephone: 01429 522154 Monday Friday, 9.00 am 5.00 pm District Nursing Single Point of Access telephone: 01429 522500 If you have any worries or concerns you should contact your GP during normal surgery hours. Outside surgery hours you should contact your GP s surgery for the Out of Hours Service number. Further information is available from: Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ Freephone: 0808 808 0000 Monday Friday, 9.00 am 8.00 pm or via website at: www.macmillan.org.uk NHS Choices telephone: 111 (when it is less urgent than 999) Calls to this number are free from landlines and mobile phones or via the website at www.nhs.uk 9
This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Quality Assurance Team, University Hospital of North Tees or email: patientinformation@nth.nhs.uk. Comments, Concerns, Compliments or Complaints We are continually trying to improve the services we provide. We want to know what we are doing well or if there is anything which we can improve, that s why the Patient Experience Team is here to help. Our Patient Experience Team is here to try to resolve your concerns as quickly as possible. If you would like to contact or request a copy of our PET leaflet, please contact: telephone: 01642 624719 Monday Friday, 9.00 am 4.00 pm Messages can be left on the answering machine and will be picked up throughout the day. freephone: 0800 092 0084 Mobile (can use text): 0779 506 1883 Email: patientexperience@nth.nhs.uk Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person: telephone: 01642 617617 24 hours a day, 7 days a week The Patient Experience Team is available to discuss your concerns in person Monday Friday, 1.30 pm 4.30 pm. Data Protection and use of patient information The Trust has developed a Data Protection Policy in accordance with the Data Protection Act 1998 and the Freedom of Information Act 2000. All of our staff respect this policy and confidentiality is adhered to at all times. If you require further information please contact the Head of Communications. telephone: 01642 624339 or www.dataprotection.gov.uk University Hospital of North Tees, Hardwick, Stockton-on-Tees. TS19 8PE University Hospital of Hartlepool, Holdforth Road, Hartlepool. TS24 9AH Telephone: 01642 617617 Fax: 01642 624089 Corp/247 (2014) For Review Summer 2017