As illness progresses, people become weaker and need more support from those caring for them. Understanding what happens when they are approaching death will help to anticipate the care they need. Some of the things that happen at this time may seem strange or frightening, especially if they are not expected. People are individual, so it is not easy to say exactly what will happen and in what order changes might occur, but this sheet seeks to explain what may happen in the last few days and hours of life.
Eating and drinking
As people become weaker, they may need help with eating and drinking. They may feel sick or find it difficult to swallow: if this happens, it is important to tell their nurses or doctors. As people get nearer the end of their life they often don’t want to eat or drink: this is normal and rarely causes them distress, though those caring for them are often worried about this. Again, it is important to let the doctors and nurses know about any concerns you may have.
As people become weaker they may find it difficult to swallow medication. Their doctor will often decide that some medications can be stopped as they are no longer needed in the final days of life. Other medications, for example pain relief, can be given in different ways.
As a person’s illness progresses, they are likely to get weaker each day and will spend more time sleeping and become more drowsy. They will become less able to talk or join in things that are happening around them. Even if they are drowsy or asleep, they may still hear what’s going on and can take comfort from hearing the usual sounds of life or hearing someone talking to them, even when they are unconscious. Towards the end, some people may lapse into unconsciousness and cannot be roused at all for a period before they die. Some people never lose consciousness and die in their sleep.
People may experience changes to their breathing in the last days of their life. People who have had difficulty breathing may find it easier to breathe, as the body needs less oxygen because it is less active. Breathing may be made worse if they are anxious. People who are very drowsy or unconscious may have noisy breathing because of a build-up of fluid in the back of the throat, which they are no longer able to cough up. Such noisy breathing does not distress the patient, though it may be distressing for those around them: it may be eased by moving the patient into a different position and by medication.
When death is near When death is only hours away, breathing may change again, becoming shallow and irregular. Sometimes there are pauses between breaths that become longer until the last breath is taken. They may produce less urine and it will become darker in colour as they drink less. They may lose control over their bladder: if this happens the nurses will give advice. Some people may become restless, agitated or confused: if this happens, the nurse or doctor can consider giving medication. Arms and legs may become cool to the touch and blue in colour as a result of blood circulation slowing down. The skin may become dry or moist and clammy.
Support in the home Doctors and nurses should be visiting to check on people close to the end of life: they will be happy to answer any of your questions. They are available 24 hours a day every day of the week, though they are often particularly busy during the night. It is normal for people to feel frightened and out of their depth when their loved one is close to death. It is OK to ask for help or just to talk to someone about your concerns and fears. In working hours call your GP practice: at nights and weekends call 111 (rather than 999) who will be able to get hold of a doctor or nurse for you.
When someone dies Most people stop breathing and die peacefully after a period of unconsciousness. If you think this has happened, phone your GP practice in hours, or 111 out of hours, and explain that you think they have died and that this was expected. They will arrange for someone to visit to confirm that they have died and explain what happens next and what you need to do and what support is available.
Non-urgent advice: Support
If you feel you need support or advice, it may be helpful to first talk to your GP. They may be able to signpost you to support services. Your place of work or school may also be able to help. Faith communities can also be a source of support for many people.
If you feel that you or a loved one are at immediate risk to themselves or others, please contact your GP, A&E department or call NHS 111. If you are experiencing a mental health crisis, call 111 and select option 2 when prompted for the mental health service. You can also access 111 online via www.111.nhs.uk . You can also contact the Samaritans by calling 116 123.
Hospital Bereavement Care Services
If a person died in hospital, support for the bereaved is offered by the hospital bereavement care services and the chaplaincy teams. Please note that chaplaincy services in all the hospitals are for people of all faiths, or none.
Alan Hudson Day Treatment centre, Wisbech part of Arthur Rank Hospice Services Offers bereavement support to the families of patients who have received care from the service. Email: [email protected] Tel: 01945 669 620
Sue Ryder St John’s Hospice, Moggerhanger, Bedford Offers bereavement support to families and friends of those patients for whom this Hospice service has cared. Email: [email protected] Tel: 01767 642 446
Sue Ryder Thorpe Hall Hospice, Peterborough Family support team Specially trained staff and volunteers offer family support to patients, and pre- and post-bereavement support to their loved ones on a one-to-one and group basis, including Wayfinders, a bereavement support walking group. Specialist support is also available for children and young people. Email: [email protected] Tel: 01733 225 921 Website: Online Bereavement Support | Sue Ryder
The Norfolk Hospice Tapping House Offers support in bereavement to family members of patients who have received care from the service. This includes counselling, individual support and bereavement support groups. Tel: 01485 601 700 Monday to Friday, 09:00 to 17:00 Website: The Norfolk Hospice
Support after the loss of a child, including during pregnancy and birth.
The Compassionate Friends A charitable organisation of bereaved parents, siblings and grandparents who support other bereaved parents, siblings, and grandparents who have suffered the death of a child. Email: [email protected] Tel: 0345 123 2304 Open every day 10:00 to 16:00 and 19:00 to 22:00 Website: The Compassionate Friends (tcf.org.uk)
Child Bereavement UK Supports families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. Email: [email protected] National support & information line: 0800 028 8840 Website: Child Bereavement UK
CRUSE Bereavement Care This voluntary organisation has a specialist team providing support to children and young people. CRUSE National helpline: 0808 808 1677 Open Mon and Fri 09:30 to 17:00, Tuesday to Thursday 9:30 to 20:00, weekends 10:00 to 14:00 Website: Home – Cruse Bereavement Support
Ormiston Families Stars Provides specialist counselling for bereaved children and young people aged 0-25, living in Cambridgeshire. Also provides support for families and professionals. (Service not provided to those living in Peterborough). Email: [email protected] Tel: 01223 292 276 Website: Ormiston Families Stars – Ormiston Families
The Young People’s Counselling Service, Peterborough Provides free and confidential counselling for young people aged 11-16 years old who are dealing with emotional distress – such as bereavement, loss, loneliness and anxiety, low self-esteem, bullying, self-harm, abuse, addiction or depression. Email: [email protected] Tel: 01733 903288 (Peterborough), 01945 479956 (Wisbech) Website: The Young People’s Counselling Service – Supporting Young People (ypcs.uk)
CRUSE Bereavement Care CRUSE bereavement care promotes the wellbeing of anyone bereaved by death to enable people to understand their grief and cope with their loss. CRUSE National helpline: 0808 808 1677 Open Mon and Fri 09:30 to 17:00, Tuesday to Thursday 9:30 to 20:00, weekends 10:00 to 14:00 CRUSE National website: Home – Cruse Bereavement Support
Lifecraft Cambridgeshire and Peterborough A contact point providing support and information on bereavement after a loved one’s suicide. Email: [email protected] Tel: 01223 566 957 Website: Welcome – Lifecraft
Compassionate Friends – Local Groups Local support groups for parents bereaved through suicide within Cambridgeshire and Peterborough. Please contact National Helpline or [email protected] for further information on local support groups available. National helpline: 0345 123 2304 Open every day 10:00 to 16:00 and 19:00 to 22:00
The Heart and Soul Team at Cambridgeshire and Peterborough Foundation Trust Provides a bereavement support group to give individuals the opportunity to meet others who have been bereaved by suicide and be able to talk in a warm, caring environment supported by experienced bereavement volunteers. The bereavement support group meets on the 2nd Monday of each month, from 6.00-7.30pm, via Zoom. Meeting ID details will be sent to you on enquiry. Tel: 07973 883511 Email: [email protected]
Support After Suicide A network of organisations who support people who are affected by suicide Website: Support After Suicide
Dying Matters A coalition of members across England and Wales, which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Website: Dying Matters | Hospice UK