What to expect when someone close to you is in their final days

This information is sourced from Dr Kathryn Mannix

Eating and Drinking

In the last days of life the person’s appetite and thirst is likely to be much reduced. Families and carers may be concerned about the effects of reduced food intake or dehydration but this is a natural and expected part of the dying process. The body is slowing down, and if someone eats or drinks more than they really need it can cause them discomfort. More care is needed with swallowing and soft food is a little safer.  

Things that may help:

  • Let the person choose if and when they want to eat or drink  
  • Offer small amounts of soft food, especially the person’s favourite flavours
  • Offer crushed ice or small ice lollies instead of drinks
  • Use a small spray bottle to mist the mouth with small amounts of water
  • Frequent mouth care can prevent the person feeling thirsty     
  • NHS Herts Valleys have produced a helpful leaflet (see downloads) with suggested food and drinks 
Breathing 

As a person’s body shuts down, it is normal that their breathing becomes shallower often with long pauses between breaths. Sometimes this alternates with rapid breathing. Both are normal and not a sign of distress or suffocation. 

Sometimes the person’s breathing may become irregular and noisy. This is likely to be because they are not able to swallow their saliva, which can cause a rattling sound. Whilst the sound may be unsettling it does not usually cause distress. If there is distress then small doses of medicines to dry the secretions, or to deepen sleep may help.

Tiredness, sleep and consciousness

As time goes by the person will spend more time sleeping, often very deeply. Some people become completely unconscious for a period of time - this could be short, or as long as several days.

Changes in complexion and temperature

The person’s skin may feel cold and change colour. Their hands, feet, ears and nose may feel cold to the touch due to reduced circulation in the final hours. Occasionally, a person’s hands or other parts of the body may swell and their skin may also become mottled or uneven in colour as their circulation slows down.

Confusion and Agitation

In the last few days some people become more restless and agitated. They may hallucinate, and see or hear people or things that are not actually there which can be distressing to watch.

Simple things like favourite music, familiar voices, lavender oil on the pillow may help but there is also medication that may help a person to settle. There are some oral options that may help (to avoid injections), even in a very sleepy patient. The Palliative Care Team can advise.
Loss of bodily functions

The person may lose control of their bladder or bowels. This happens because the muscles in these areas relax and don’t work as well as they did. They may also have fewer bowel movements as they eat less, and their urine may get darker as they drink less. There are many practical ways that nurses can advise on how to manage this to help retain dignity.

The Hospice in the Weald guide on the Last Days and Hours has more detail.

Dr Kathryn Mannix is a hugely experienced palliative care doctor and author, and she speaks in this video below about the process of ordinary dying and what patients and families can expect.

Recommended Resources

Marie Curie - What to expect in the last weeks and days

Published 30th August 2024

Hospice in the Weald - Informed Guide

Published 30th December 2022

Hillingdon Hospitals NHS Trust: What to expect when someone important to you is dying

Published 1st January 2022

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Adult Carer Core Support
Close

Adult Carer Core Support

T. 0300 303 1555

W. https://www.carersfirst.org.uk/

This free service has been commissioned to support adult carers. 

The offer includes:

  • One to one information and support to carers 
  • Support via phone, text, email or face to face visits including home visits
  • Groups and activities for carers
  • Help to get Carers Trust grants
  • Referrals to carefree breaks
  • Free SIM cards

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Close

Bliss offers a wide range of free services for the families of premature and sick babies including a video call support service.

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Children's Community Nursing Service: Essex Partnership University Trust
Close

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T. 0344 257 3956

The Children's Community Nursing Team (CCN Team) provides clinical nursing care for children and young people with complex and ongoing clinical health needs in the community including palliative care. The team cares for children and young people between the ages of 0 – 18 years who would need to return to hospital or their GP for their health care needs.

Children's Community Nursing Service: North East London Foundation Trust
Close

Children's Community Nursing Service: North East London Foundation Trust

T. 0300 300 1521 option 1

W. https://www.nelft.nhs.uk/services-bsbwtk-community-nursing-clinicians

The Children’s Community Nursing Team consists of nurses who have specialist training and experience in the care of sick children. We provide a vital link with other professionals to provide holistic care including palliative care to children and their families. We aid in preventing hospital admission and supporting early discharge by teaching and supporting families to manage their child’s condition in their own home.

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Close

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The team is available 24 hours a day, at the end of the phone, for advice and support, to arrange additional home visits. Visits to Fair Havens Hub, the Rapid access service or In Patient Unit is also available.

Please watch this video for more information.

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Close

Referrals may be made either by a patient or carer, or any professional directly involved in the patient’s care. Anyone making a referral must have the consent of the patient.

Fair Havens In Patient Unit provides assessment and management of physical symptoms that are proving difficult to control, such as pain, nausea, vomiting, and breathlessness. Respite care is also available for short stays enabling their carers to rest and recuperate. There are 8 beds in the unit.

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Please watch this video for more information.

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Close

The palliative care team aims to provide support and management of physical symptoms such as pain, and also provide psychological, social and spiritual care to patients and their families.

Rainbow Trust
Close

Rainbow Trust Children’s Charity supports families who have a child aged 0 to18 years with a life-threatening or terminal illness.

SEE Care Coordination Team
Close

This is a multidisciplinary service including Care coordinators, HCAs, pharmacy and intensive social prescribers.

The team completes complex geriatric assessments and premptively intervention on needs of patients living with frailty. The aim is to support independence and the quality of life of patients and be a point of contact for any need. 

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Close

Together for Short Lives have a helpline and family support hub to provide help and advice for those caring for a child with a serious illness.

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Close

Young lives vs Cancer support young people under 25 with cancer, and their families, to get the help they need during their cancer treatment and beyond, including bereaved families living with emotional distress. 

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Close

The support group is a way to learn more about living with a lung condition and share your experiences and stories with others.

District Nursing
Close

The team delivers nursing care to housebound patient's including wound care, assessment, palliative care, medication, pressure ulcer management.

Fair Havens Community Service
Close

Fair Havens Community Team provides assessment, support advice and care for people wishing to be cared  and supported in their locality community setting. Support is available for those in care homes.

The team is available 24 hours a day, at the end of the phone, for advice and support, to arrange additional home visits. Visits to Fair Havens Hub, the Rapid access service or In Patient Unit is also available.

Please watch this video for more information.

Fair Havens Hospice In Patient Unit
Close

Referrals may be made either by a patient or carer, or any professional directly involved in the patient’s care. Anyone making a referral must have the consent of the patient.

Fair Havens In Patient Unit provides assessment and management of physical symptoms that are proving difficult to control, such as pain, nausea, vomiting, and breathlessness. Respite care is also available for short stays enabling their carers to rest and recuperate. There are 8 beds in the unit.

Some patients may only require a stay for a few days before going home again. Some people choose to receive hospice care several times during their illness, depending on their condition and their wishes.

Please watch this video for more information.

Hospice UK
Close

Hospice UK can help find a hospice, provide infromation and support about end of life care and guidance to plan ahead.

Little Havens Hospice
Close

Little Havens provides specialist care and support for babies, children and young people requiring specialist in-patient care for symptom management, respite and end of life care.

Palliative Care Nursing Team
Close

The palliative care team aims to provide support and management of physical symptoms such as pain, and also provide psychological, social and spiritual care to patients and their families.

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