Care and support in the last days of life Hospital Palliative Care Team 0161 206 4609 Community Palliative Care Team 0161 702 5406 Bereavement Team 0161 206 5175 All Rights Reserved 2018. Document for issue as handout.
Introduction This booklet provides information for families and others in relation to caring for a person at the end of their life. This includes information about symptoms that may be experienced, the care and support which may be given and some questions that are frequently asked at this difficult time. The booklet has a space for you to write down any other questions that you may have for the health care team. Finally, there is a page for notes that you may find useful to write down any concerns or questions that the professionals may be able to help you with. Contents What is important to me and/or the family? What happens when a person is dying? Stopping observations and medicines Symptoms and care Giving medicines using a syringe pump Medications commonly used at the end of life Place of care in the last days of life End of life comfort measures Religious, Spiritual, Emotional and Cultural Needs Care after death Organ and tissue donation Frequently asked questions Notes pages Questionnaire Key contacts and websites Page 3 4 5 5 9 9 10 11 12 13 13 14 16 24 25 1 2
What is important to me and/or the family Patient name: What happens when a person is dying? Individual experiences in the last days of life can vary from person to person; it is very difficult to predict what exactly will happen. Some common signs and symptoms may show that a person is entering the last days of life. Knowing what to expect may help to relieve anxiety and allows better planning. The dying person may become very sleepy and spend most or all day in bed resting and sleeping. Periods of being awake may reduce and eventually the person may be deeply asleep all of the time. They may have difficulty swallowing or not want to eat and drink. They may struggle to take tablets or medicines by mouth. They may lose control over their bowels and bladder. Sometimes the person may show signs of being distressed or restless. Their breathing may change and can sometimes become noisy. Their hands, feet, legs and arms may feel cold to touch. The person may become confused or disorientated. They may become emotional and have spiritual questions. They may lose interest in their surroundings and withdraw from people For many people, dying is very peaceful. It can be upsetting to watch a person go through these changes. This is part of the natural dying process and does not necessarily mean they are uncomfortable or in distress. The doctors and nurses looking after the person in the last days of life will be checking for any changes and will do all that they can to make the person as comfortable and dignified as possible. 3 4
Stopping observations and medicines A person may have been taking some medicines for many months or years and these may need to be stopped or changed if they are no longer helpful. The doctors and nurses will discuss this with you. Routine observations, for example blood pressure, regular blood sugar measurements or blood tests may no longer be done. In the last days of life these may not be of benefit to the person and may cause distress. Symptoms and Care Changes in Breathing The breathing pattern can change as the body slows down. Breathing may be fast, shallow or deep and there may be pauses between breaths. Should breathlessness be experienced there are simple measures that may help. These can include opening a window, using a fan or changing position. The patient may require a small dose of morphine. Morphine is usually given for pain but it can also be used for breathlessness and can be very effective. This may be given by an injection under the skin or as a medicine by mouth. Oxygen requirements may be reassessed and whilst it may be useful for some patients, for others, oxygen may no longer be needed. Chest Secretions Everyone makes secretions (fluid) in their chest and throat. When someone is in the last days of their life, the normal secretions that they have cannot be cleared and they may make the person sound chesty. This is due to a buildup of fluid in the air passages. The breathing can sound noisy, but is not normally distressing for the person. Changing the position of the person may help. Medications can also help to dry up some of the secretions and these can be given by injection. Pain Not everyone who is dying will have pain. Even if the person has difficulty communicating it is usually possible to tell if they are in discomfort and the doctors and nurses can check for this. If there is pain it is reassuring to know that there are several ways of relieving it. Changes in position may help the person in pain. However, for others it may be best not to change the position. This will be assessed on an individual basis. Drugs such as morphine can be useful and can be given as a medicine by mouth or by injection when needed. Medications will not be given unless they are needed. Distress and restlessness As part of the natural dying process the person may become confused, distressed or restless. Sometimes hallucinations may occur. This can be difficult for family and others to see but measures can be taken to improve these symptoms. It can help to keep the environment calm and quiet and to gently reassure the person by holding their hand and talking to them. Medicines are available which can help relieve these symptoms. The doctors and nurses caring for the person will check for any other causes that may be contributing to the distress. 5 6
Sickness and Vomiting When a person is at the end of their life they may feel sick. There are many possible reasons for this which the doctors and nurses will assess on an individual basis. The person may feel sick when they are moved or certain smells may trigger sickness. Medicines can be prescribed to help relieve this symptom via an injection. Bowels As a person becomes weaker and their condition deteriorates they may not be strong enough to use a toilet or commode. Often the bowels slow down and do not work as normal. Occasionally, due to muscle weakness the person may lose control of their bowels. If, they are very weak and are unable to get out of bed pads may be used. Bowels will be assessed by the doctors and nurses with the aim of maintaining dignity and comfort. This may be done by ensuring the patient is not distressed when having a bowel movement. If they are uncomfortable then pain killers could be given. Suppositories could be considered to ensure a regular bowel pattern if needed. Bladder As the body naturally slows down the person may pass little or no urine and the urine may become very dark in colour. Due to weakness, it may be too distressing to assist the person on and off a commode or toilet. In order to maintain dignity and comfort pads can be offered. For some people it may be kinder to have a catheter to drain urine from the bladder. This will preserve their energy and ensure they remain dignified and comfortable. If appropriate this will be discussed with the family and others. Catheters can also be used for people who have signs of retaining urine, which can cause distress and restlessness. Eating and Drinking In the last days of life a person s need to eat and drink becomes less. Some people may be able to take small amounts of food and drink, others may only be able to take sips of fluid, and some may not wish, or be able to take anything at all. When a person is close to death, though it is possible to give fluids by a drip into the veins (IV) or under the skin (subcutaneous), it is uncertain that this will prolong their life or help them feel better. The risks and potential benefits of fluids given by a drip at the end of life will vary from person to person, which the team looking after your loved one will assess regularly. It is comforting to provide good mouth care and ensure that the mouth is clean and moist. Gels and saliva sprays may be given to help with this. Families and others can be taught to clean the person s mouth if they wish. If a person is unable to drink, frequent care of the mouth and lips should be offered. For patients who are very close to death there is no definite evidence that feeding via tubes or drips lengthens survival or improves quality of life. In addition there are risks and potential discomfort related to inserting feeding tubes. If you have any concerns or questions related to this you should discuss it with the clinical team. 7 8
Giving medicines - using a syringe pump Sometimes a syringe pump, (a small portable pump) may be set up by your doctor or nurse. The syringe pump is used to deliver a constant dose of medicines usually over 24 hours and may contain more than one medicine at a time. A very small needle will be inserted just under the skin in the tummy or arm through which the medicines will be given. A syringe pump means that the person can have the medicines they need and do not need a lot of individual injections. If the person is at home, the district nurse will bring the syringe pump with them. This will be left in the person s home, should it be needed. The family or others would need to collect any medicines from a chemist. This would be arranged by the GP and DN s. Common medicines used to relieve symptoms at the end of life Medicine Morphine Midazolam Levomepromazine Glycopyrronium Reason for Use Pain or breathlessness Agitation and restlessness Nausea and vomiting Secretions in the chest Notes Medicines can be given to help with side effects. Similar medicines may sometimes be used as an alternative such as Oxycodone or Fentanyl. Different anti-sickness medicines may be used depending on why a person is feeling sick. Sometimes a degree of chest secretions may persist even when medicine is given. Side effects related to each medicine can be discussed with the Nursing and Medical Staff. Place of care in the last days of life The person and their family may have wishes about where care should be at the end of life. Some people may have made their wishes about this known in advance. It is important that we talk to you about this and where possible we would like to meet their wishes. If cared for in hospital the persons family can stay by the bedside, the ward staff will discuss with you the facilities available e.g. shower, car parking, food and drink. People can also be cared for in their own home or care home at the end of their life. If the person is in hospital when this decision is made the doctors and nurses will make arrangements with the aim of getting the person home as quickly as possible. District Nurses will be arranged to visit dependant on the persons need. The District Nurses are available and can be contacted in an emergency, both night and day. Other services in the community may be available including Hospice at Home and Community Palliative Care Nurses. The out of hours GP service can also support care at home/care home. Hospice care may also be provided in some circumstances. The Palliative Care Team can make a referral to your local hospice as appropriate. 9 10
End of life comfort measures What matters most to you and your loved one is essential information to help ensure all the staff in the ward/team meet you and your family needs. You may find it helpful to write down what is important to you in the notes section of this booklet. If the person is in hospital this may include the privacy of a side room on the ward or unit if this is possible. Please feel free to ask the nurses to remove unwanted equipment from the room and ensure you can make the room more personal. You may wish to bring the persons own night wear, blanket from home or dressing gown. A camp bed could be placed next to the bed for you, if you do not wish to lie on the bed, but you can be at the same height. Some families and others may want to be involved in assisting the nurses with comfort and care, if you do please tell the nurses. Families may want to record familiar sounds, children, grandchildren or family members who cannot be present either singing or talking to the person. Playing favourite music may be soothing. Children are very welcome to visit to say goodbye to a loved one. If you wish to have a keepsake, such as a hand print or lock of hair, or a photograph the nursing staff will be able to help you with this. Religious, Spiritual, Emotional and Cultural Needs When we or someone we know is at the end of their life, we may find talking to someone can provide the support we need. Often this support comes from family and friends but sometimes it helps to talk to someone who is independent. At this difficult time some people may wish to have their religious, spiritual, cultural or emotional needs supported. Hospital Chaplains are approachable and nonjudgemental and are available 24 hours a day, 7 days a week to provide support for people and families and others. If a person has spiritual or religious concerns at home/care home the nurses can contact local churches and appropriate faith groups to support the person. For further information regarding specific denominations and support available at the end of life please ask staff to contact the Chaplaincy department. 11 12
Care after death The death of someone close to you is very significant and everyone reacts very differently to the situation. After a person has died they will be seen by a doctor or nurse, the nursing staff will then ensure the person is cared for before being taken to the mortuary. The nurses will ask if anyone in the family wishes to assist with this care (washing/dressing). The person may be taken to the mortuary on the hospital bed and a family member may wish to go with them. It is possible to see patients in the mortuary and arrangements can be made, please ask the nursing staff for advice. If the death of the person is at home/care home they will be seen by their GP or nurse who will ensure that the person is cared for before going to the funeral directors of your choice. Should you have any spiritual, cultural or practical wishes following the death, such as urgent release for burial or cremation, this can be discussed and the person s needs met. The intention would be to deliver care that is sensitive to the cultural and religious needs and personal preferences of the dying person and their family and others. Organ and tissue donation When a person has died, they may be able to donate organs or tissues (eyes, skin) for transplant. It may be possible for this donation to take place up to 24 hours after their death. If you would like to speak to a specialist nurse about organ or tissue donation this can be arranged, any time. Frequently Asked Questions What happens if my relative gets better? Occasionally a person s condition can improve. If a person gets better the care they need will be reassessed by the doctors and nurses caring for them. The care and treatment will be discussed with you. What do I tell the children? Talking to children about a person approaching the end of life can be challenging and exactly what you tell them often depends on their age. Generally it is best to be as honest as possible with children. This may be distressing and hard but it can help children deal with things after the death a little better. The team caring for the person can advise you further regarding booklets and literature that may help you talk to your children. How long can we stay with the person once they die? You may stay with the person as long as you feel you need to following their death. What would happen if the person deteriorated and I wasn t around? If you are not around when they deteriorate the nurses on the ward will call you to inform you as you may wish to come in. The nurses will observe them closely and comfort them until you get there. If the person is at home then someone will need to be at home with them at all times. What will happen to my loved one s personal belongings? The personal belongings may be taken as appropriate by the next of kin. continued page 15 13 14
Can the person hear and communicate with us even if they seem deeply asleep? People vary. Some people communicate by squeezing hands until they are too weak to do so. Some may still be able to communicate a little. As their condition deteriorates further they will be able to communicate less. Sense of hearing is a fairly strong sense and it can be comforting for them to hear familiar voices from friends and family. It may even be appropriate to play music. It is unlikely that they will always be able to continue to communicate with you as their condition deteriorates. Is it best to let them rest and not to disturb the person? It is generally best to ensure calm, quiet surroundings for them. Nurses may try to locate a side room for your loved one, however, this is not always possible and so as much as possible will be done to ensure a calm ward environment. If they are at home, again as calm an environment as possible is preferable. Notes Your notes: Notes written by: 15 16
Notes Notes Your notes: Your notes: Notes written by: Notes written by: 17 18
Notes Notes Your notes: Your notes: Notes written by: Notes written by: 19 20
Any questions for doctors and nurses Any questions for doctors and nurses Your question: Your question: Question raised by: Question raised by: 21 22
Any questions for doctors and nurses Your question: Questionnaire The Trust strives to improve patients and families experience and so your opinion is important to us. We value any feedback you can give us regarding the care and treatment that your relative received. You may receive a questionnaire in the future - if you are willing to share your experience please consider completing this. If you would rather not receive this, please inform a member of staff. Thank you. Question raised by: 23 24
Key contacts: Useful websites and other information: GP* 111 (weekend) Out of hours GP 111 111 (weekend) District Nurse 0161 631 4774 0161 206 8921 (weekend) Out of hours District Nurse 0161 206 8921 Community Palliative Care Team 0161 702 5406 St Ann s hospice advice line 0808 144 2860 Macmillan information centre 0161 206 1455 Ward/Unit* Hospital Palliative Care Team 0161 206 4609 Monday-Friday 8.30am-4.30pm Weekend/Bank Holiday 8.30am-4.30pm call hospital switch board and bleep 07623 613862 Chaplaincy Team 0161 206 5167 Bereavement Team 0161 206 5175 Palliative Care Counsellor 0161 212 2362 Palliative Care e-mail *Add telephone numbers for weekdays macnurse@srft.nhs.uk Marie Curie Macmillan Childhood Bereavement Winstons Wish Carers UK Help the Hospices Age UK CRUSE NHS Dying Matters Salford Royal Hospital Palliative Care Team Acknowledgements: www.mariecurie.org.uk www.macmillan.org.uk www.childhoodbereavement.org.uk www.winstonswish.org.uk www.carersuk.org adviceline@carersuk.org www.helpthehospices.org.uk www.ageuk.org.uk www.crusebereavementcare.org.uk helpline@cruse.org.uk www.nhs.uk www.dyingmatters.org www.srft.nhs.uk/about-us/depts/ palliative-care Palliative care guidelines: Patient information leaflet NHS Lothian Nov 2013 End of life: A Guide Macmillan Cancer Support and Marie Curie Cancer Care 4Th Edition (June 2013). 25 26
G18013102W. Design Services Salford Royal NHS Foundation Trust All Rights Reserved 2018 This document MUST NOT be photocopied Information Leaflet Control Policy: Unique Identifier: MED09(18) Review April 2020 This leaflet was produced in partnership with St Ann s Hospice. For further information on this leaflet, it s references and sources used, please contact 0161 206 4609. Copies of this leaflet are available in other formats (for example, large print or easyread) upon request. Alternative formats may also be available via www. srft.nhs.uk/for-patients/patient-leaflets/ If you need this information leaflet translated, please telephone: In accordance with the Equality Act we will make reasonable adjustments to enable individuals with disabilities to access this service. Please contact the service/clinic you are attending by phone or email prior to your appointment to discuss your requirements. Interpreters are available for both verbal and non-verbal (e.g. British Sign Language) languages, on request. Please contact the service/clinic you are visiting to request this. or Email: InterpretationandTrans@srft.nhs.uk Salford Royal operates a smoke-free policy. For advice on stopping smoking contact the Hospital Specialist Stop Smoking Service on 0161 206 1779 This is a teaching hospital which plays an important role in the training of future doctors. The part patients play in this process is essential to make sure that we produce the right quality doctors for all of our futures. If at any time you would prefer not to have students present please inform the doctor or nurses and this will not affect your care in anyway. Salford Royal NHS Foundation Trust Stott Lane, Salford, Manchester, M6 8HD Telephone 0161 789 7373 www.srft.nhs.uk If you would like to become a Foundation Trust Member please visit: www.srft.nhs.uk/ for-members If you have any suggestions as to how this document could be improved in the future then please visit: http://www.srft.nhs.uk/ for-patients