The Last Days of Life, Death and Bereavement

You may expect the last days of life to follow an exact sequence or believe that one sign can predict precisely when death will occur. You may also worry that reduced eating, changing breathing or increased sleep always means that someone is suffering. After a death, you may expect grief to follow a fixed series of stages. Grief is more individual and less orderly than this.

Recognising the last days can be uncertain The last days of life often refer to the final two or three days, but the exact period varies. Healthcare professionals consider the underlying condition, recent rate of deterioration, level of consciousness, eating and drinking, breathing changes, mobility and function, circulation and skin changes, symptoms such as agitation, and information from people who know you well. No single sign proves that death is imminent. A person thought to be dying may temporarily stabilise or improve. Clinical guidance therefore recommends continuing assessment and reviewing the individual care plan at least daily. Uncertainty should be explained honestly The team should explain what changes they have observed, why they think death may be approaching, how certain or uncertain they are. What will be reviewed, which treatments will continue, what comfort measures are available, who to contact, and what the people close to you may notice. False certainty can create distress if events unfold differently. Avoiding the subject entirely can leave people frightened and unprepared. You can choose how much detail you want and who should be included in conversations. Your wishes remain important If you can participate, the team should ask about your understanding of what is happening, how much information you want, who you want present. What helps you feel comfortable, cultural or spiritual practices, preferred surroundings, important conversations or relationships, existing advance plans, and your priorities for alertness and symptom relief. If you cannot decide, relevant advance plans, legal decision makers and your known wishes should guide care. Increasing sleepiness is common As death approaches, you may sleep for longer, have shorter periods of alertness, speak less, become more difficult to wake, and move between wakefulness and unconsciousness. This usually reflects reduced energy and changes within the body. People close to you can continue speaking calmly, introducing themselves and offering gentle reassurance. You can continue speaking calmly if it feels right. A familiar voice may be reassuring even when the person does not respond. Not every change in consciousness should automatically be assumed to be dying. Sudden drowsiness may also relate to medicines, infection, low blood glucose or another reversible problem and should be assessed in context. Eating and drinking often reduce You may lose interest in food and drink or become too tired to eat. Swallowing may also become less safe. Forcing food or drink can cause distress, coughing or aspiration. People close to you may find reduced intake upsetting because providing food is strongly connected with care. The body's needs and ability to process food change as death approaches. Support may include offering small amounts when wanted and safe, respecting refusal, helping with mouth care, moistening the lips, reviewing swallowing, changing the route of essential medicines, and discussing whether clinically assisted hydration may help. People in the dying phase should not be forced to eat and may need alternative medicine routes when swallowing becomes difficult. Mouth care can provide comfort Dry mouth does not always mean that the whole body needs intravenous fluid. Comfort may improve through regular mouth assessment, gentle tooth or denture care, moistening the mouth, lip balm, small sips or ice when safe and wanted, treatment of oral infection or soreness, and reviewing medicines that worsen dryness. Ask the clinical team to show you safe mouth care techniques. Clinically assisted hydration is an individual decision Clinically assisted hydration includes fluid given through a drip or under the skin. It may help some people who have distressing thirst or delirium related to dehydration. It may also cause problems, including fluid overload, swelling or worsening respiratory secretions. It is uncertain whether clinically assisted hydration prolongs life, extends dying, or whether withholding it hastens death. Decisions should therefore consider your wishes, swallowing, thirst, consciousness, risk of fluid overload and possibility of temporary recovery. If a trial is started, the team should monitor whether it helps or harms and continue, reduce or stop it accordingly. Breathing may become irregular Breathing may become shallower, speed up or slow down, alternate between deep and shallow breaths, include pauses, become noisier, or appear more effortful. Long pauses between breaths can be part of the natural dying process. However, the team should still assess whether breathlessness, pain, anxiety, fluid or another treatable problem is causing distress. Noisy breathing can sound more distressing than it feels When swallowing and coughing become weaker, saliva and mucus can collect in the throat and upper airways, producing a rattling or gurgling sound. The sound may be upsetting for relatives. It does not necessarily mean that the person feels as though they are choking. Clinicians should assess possible causes and explain that the noise is unlikely to cause discomfort, while still addressing any signs of distress. Changing position or prescribed medicines may sometimes help. Deep suction is not routinely helpful and may cause discomfort. Circulation and appearance may change As circulation changes, hands and feet may become cool, skin may become pale or mottled, lips, tongue or the inside of the mouth may appear bluish, the pulse may become weaker or irregular, and urine production may reduce. Blankets can help maintain comfort, but excessive heating may be uncomfortable. Skin changes can be harder to see on darker skin tones. The lips, tongue, nail beds, palms and soles may provide additional clues. Confusion or restlessness should be assessed You may become disorientated, frightened, unable to recognise people, restless, agitated, repetitive in speech or movement, sleepy during the day and awake at night, or aware of sights or sounds that others do not experience. Possible contributors include pain, a full bladder, constipation, breathlessness, medicines, infection, organ failure, anxiety, and unfamiliar surroundings. Calm voices, familiar people and a quiet setting may help. The clinical team should assess reversible causes and prescribe treatment when distress remains. Do not physically restrain a restless person unless an immediate safety situation requires trained intervention. Pain is not inevitable Some people have pain during the last days, while others do not. If you cannot describe pain, clinicians may look for facial tension, guarding, groaning, changes during movement, distress when touched, altered breathing, or withdrawal or agitation. These behaviours are not specific to pain, so the whole pattern should be assessed. Pain medicines should be selected according to previous treatment, likely cause, organ function and response. Medicines are reviewed As swallowing and body function change, some long term medicines may no longer provide useful benefit or may cause harm. The team may continue medicines that support comfort, stop medicines that no longer help, change oral medicines to another route. Prescribe medicines for possible future symptoms, use injections when needed, start a syringe pump for continuous delivery, and review symptoms and side effects regularly. Stopping a preventive medicine does not mean that care has stopped. It may reduce burden while preserving treatments that provide current comfort. Anticipatory medicines and a syringe pump Anticipatory medicines can allow prompt treatment of expected symptoms, especially at home or during nights and weekends. They may be prescribed for pain, breathlessness, nausea or vomiting, anxiety or agitation, and noisy respiratory secretions. The medicines should have clear instructions and should be administered only by someone appropriately authorised and trained. Having them available does not mean that every symptom will occur. If swallowing becomes difficult, a syringe pump may deliver one or more medicines continuously beneath the skin. The pump should be checked for alarms, leakage, disconnection, redness or swelling at the site, unexpected drowsiness, poor symptom control, and remaining medicine volume. Contact the clinical team if you are concerned. Do not alter settings yourself unless you are an authorised professional following the prescription. Comfort involves more than medicines Comfort may also include: Repositioning. Pressure area care. A quiet room. Familiar music. Gentle touch if welcomed. Mouth care. Clean, dry bedding. Managing light and temperature. Religious or cultural practices. Limiting unnecessary observations or procedures. Allowing important people to be present. Privacy. Ask before touching, moving or providing personal care where the person can express a preference. People close to you do not have to provide nursing care Family and friends may wish to help. They may also feel frightened, exhausted or unsure. They can sit with you, speak or read aloud, play familiar music, help with gentle mouth care after instruction, inform staff about changes, contact other important people, support cultural or spiritual practices, and rest when they need to. They should not be expected to perform unsafe moving, injections, suction or complex clinical tasks without appropriate assessment and training. It is acceptable to leave the room. People sometimes fear that a person will die while they are absent. Death may occur when relatives are present or when they briefly leave. Neither outcome reflects the strength of the relationship or the quality of support provided. There is no perfect way to be present. Ask for help when symptoms are not controlled Contact the clinical team urgently when there is severe pain, persistent distressing breathlessness, repeated vomiting, marked agitation, seizure, heavy bleeding, a blocked catheter causing distress. Inability to give prescribed medicines, a syringe pump problem, an unexpected rapid change, or uncertainty about whether the person is dying. When death occurs When a person dies, changes such as breathing and the heart stopping, no response, fixed pupils, cooling skin, and the jaw, eyelids or bladder and bowel relaxing may be noticed. These are described here to help you understand what is happening, not as instructions to confirm death yourself. Follow the written local plan and contact the named service, and a suitably qualified professional will verify the death. These changes can feel unfamiliar. If the death was expected, the written care plan should explain whom to contact. You do not always need to act immediately after an expected death. You may have time to sit quietly, contact people important to you and observe cultural or religious practices where possible. What to do after an expected death at home Follow the local plan provided by the GP, community nursing or palliative care team. Depending on local arrangements and time of day, you may be asked to contact the community nursing team, the GP practice, the hospice or palliative service, NHS 111, or another named verification service. A qualified professional will attend to verify that death has occurred. Once the necessary verification and local processes are complete, the chosen funeral director can be contacted. Call 999 if the death is unexpected or uncertain Call 999 when the death was sudden or unexpected, no end of life plan exists and you are unsure whether the person has died, the person may still be resuscitated, injury. Overdose, suicide, violence or another unusual circumstance may be involved, a child has died unexpectedly, or you have been instructed to do so by the emergency plan. Follow the call handler's instructions. Do not assume that a person has died merely because they are unresponsive. A DNACPR record explains that CPR should not be attempted if the heart or breathing stops. It does not itself confirm that death has occurred, replace professional verification, explain the cause of death, or remove the need to contact the appropriate service. Tell the attending professional where the form is stored. Verification, certification and registration are different Verification of death is the clinical confirmation that a person has died. Certification of the cause of death records the medical cause where this can lawfully be established. Registration is the formal civil process completed through the registration service. A coroner or procurator fiscal may become involved when a death is sudden, unexplained, violent or falls within another reportable category. Procedures vary across the UK. Since September 2024, non coronial deaths in England and Wales undergo independent medical examiner scrutiny before registration. This is a routine safety and quality process and does not mean that something suspicious has occurred. You may need information about the medical examiner or coroner process, registering the death, funeral arrangements, organ or tissue donation, returning medicines or equipment, informing government departments, benefits and finances, bereavement services, and collecting personal belongings. You do not need to remember every step at once. Ask for written information. Grief is not a fixed sequence Grief is the response to loss. It may involve sadness, numbness, shock, relief, anger, guilt, longing, anxiety, tiredness, difficulty concentrating, changes in sleep or appetite, moments of humour or enjoyment, and a sense of unreality. These experiences do not have to occur in a particular order. You may move between feelings, experience several at once or not experience some at all. Grief is individual and often occurs in waves, with no single correct way to feel. Intense grief is not automatically an illness Strong grief soon after a death can be painful and disruptive without being a mental disorder. There is no universal timetable for crying, returning to work, sorting belongings, attending social events, feeling able to talk about the person, experiencing enjoyment, or entering a new relationship. Culture, faith, the relationship, the circumstances of the death and previous experiences all influence grief. Medical support should not be used to imply that normal grief is wrong or needs to be removed. Grief can return unexpectedly A wave of grief may be triggered by anniversaries, birthdays, music, places, smells, administrative tasks, family events, a new diagnosis, another bereavement, or sorting possessions. A difficult day after a period of coping does not mean that you have returned to the beginning. Many people gradually develop ways to carry the loss while continuing their lives. Relief can coexist with sadness You may feel relief when suffering has ended, a prolonged period of uncertainty is over, intensive caring responsibilities have ended, a difficult relationship has ended, or the death was peaceful. Relief does not mean that you did not care. Several conflicting emotions can be present together. Grief can affect the body Bereavement may affect sleep, appetite, energy, concentration, memory, muscle tension, digestion, awareness of heartbeat, susceptibility to illness, and management of existing conditions. Do not automatically attribute every new physical symptom to grief. Severe chest pain, stroke symptoms, collapse, major breathlessness or another acute presentation still requires appropriate medical assessment. Practical pressure can intensify grief After a death, you may face funeral decisions, financial uncertainty, housing changes, caring for children, legal responsibilities, work expectations, family disagreement, loss of social contact, and changes in identity and routine. Practical help may be as valuable as emotional conversation. Support may come from family, friends, community organisations, faith groups, employers, welfare advisers or bereavement services. You can ask for support without being ill You may find support through the GP practice, hospice bereavement services, hospital bereavement teams, community or faith groups, bereavement charities, counselling, peer groups, school or university services, workplace support, and social prescribing. Seeking support does not mean that your grief is abnormal. You may need a different kind of support at different times. Children grieve in their own ways Children may move between grief and ordinary activity quickly. They may ask the same question repeatedly, seem unaffected and become upset later, express grief through play, worry that another person will die. Blame themselves, become clingy, have sleep or behaviour changes, and revisit the meaning of the death as they grow. Use clear, age appropriate language. Avoid confusing phrases such as "gone to sleep" when these could create fear about sleep. Maintain routine where possible and tell schools or childcare services what support may be needed. Children can benefit from honest preparation and support before and after a death. Additional help may be useful Speak to a GP or appropriate support service when distress feels unmanageable, you remain unable to care for yourself or dependants, sleep disruption is severe or prolonged, you are using alcohol, medicines or drugs to cope. Memories of the death feel repeatedly overwhelming, you are experiencing persistent depression or disabling anxiety, existing mental or physical health problems are worsening. You feel isolated and unsupported, or you are worried about a child or vulnerable adult after the death. The purpose is not to impose a timetable. It is to identify support when grief, trauma, illness or practical crisis is causing serious harm. Local procedures and cultural practices matter Processes after death differ according to UK nation, place of death, whether the death was expected, whether the coroner or procurator fiscal is involved, religious or cultural requirements, organ donation arrangements, and local service availability. Tell the healthcare team promptly about time sensitive cultural or religious practices. Staff should support these where possible within legal and safety requirements. This lesson does not replace the individual care plan, local after death procedure or professional bereavement advice.

Care during the last days connects four continuing processes: recognise a changing pattern while acknowledging uncertainty, review comfort, symptoms and wishes regularly, support the people who are present and explain what may happen, and after death, follow the appropriate practical process while allowing grief to unfold in its own way. The aim is not to control every change it is to respond with comfort, honesty and support.