Terminal Agitation: Information for clinicians

Confusion, agitation and restlessness are common towards the end of life due to many factors, and the first question is whether there is an easily reversible cause (e.g. urinary retention). Consider all reversible causes and what treatments are still appropriate at this stage of life.

Agitation may be a sign that life is coming to an end and the best approach may be to focus on keeping the person calm. Careful discussion is needed with care givers to explore options.

Consider the following causes
  • Physical causes of discomfort including including pain, nausea, constipation, urinary retention, itching due to opioids or organ failure
  • Opioid toxicity (myoclonic jerks, confusion, pin-point pupils, hallucinations and respiratory depression). If this is suspected, consider reducing the opioid by 30-50% or an opioid switch 
  • Metabolic causes (hypoxia, hypercalcaemia, renal and liver failure, nicotine withdrawal)
  • Infection with delirium
  • Cerebral metastases
  • Spiritual and psychological distress
Top Tips
  • Always try non-pharmacological methods to relieve agitation e.g. presence of family, calm lighting, quiet, 1:1 care
  • Lower starting doses of sedative medication in frail elderly
  • Sedation is often more difficult if there is a history of alcohol or substance misuse
  • The intention is to relieve suffering, not to hasten death
Symptom management

The following drugs are commonly used for management of agitation at the end of life.

Haloperidol 2.5mg S/C Stat 5mg -10mg per 24h via CSCI
Midazolam 2.5mg-5mg S/C or buccal Stat 10-60mg per 24h via CSCI
Levomepromazine 12.5-25mg S/C Stat 25-150mg per 24h via CSCI
  • Starting doses of the above medication will have a calming effect but will not necessarily sedate the patient. The initial aim of treatment is to give the lowest doses to maintain calm
  • Do contact the local specialist palliative care team for more specific advice about prescribing if escalating doses of sedation are needed
  • Agitation is one of the most difficult symptoms to manage at home and important to manage confidently as families will remember this difficult time. 
  • Prescribing anticipatory medication to have at home will also help to manage symptoms.
  • Haloperidol and Levomepromazine may help more than Midazolam if hallucinations or paranoia are present. Both are also useful as anti-emetics.

Recommended Resources

West Midland Palliative Care - Restlessness and Agitation in the Dying Phase

Published 7th October 2024

Mid and South Essex Palliative Care Formulary

Published 1st October 2024

Scottish Palliative Care Guidelines – Severe Uncontrolled Distress

Published 22nd April 2020

Marie Curie – Agitation – Causes and How to Manage

Published 1st September 2018

CNWL Supporting excellent care in the last days of life at home

Published 1st April 2017

PANG Guidelines Quick Guide Agitation and Restlessness

Published 16th October 2016

PANG Guidelines Last Days – Agitation

Published 13th October 2016

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T. 01708 758643 / 01708 758610 ext. 2266

W. https://www.sfh.org.uk/crisis-support

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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.

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Close

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Use the website address above to find your local services.

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Close

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Close

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Close

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T. 0800 0184 724

W. https://iasupport.org/about/about-ia/

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IA has not only an extensive network of local groups across the UK and Ireland but also the majority of volunteers are living life after surgery.

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Close

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Close

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T. 01708 758603 / 01708 753319 Ext: 2342

W. https://www.sfh.org.uk/hospice-at-home

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Close

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T. 01708 753319 ext. 2268

W. https://www.sfh.org.uk/patient-therapies

Complementary therapies can help control symptoms and help to deal with day-to-day life.

The therapies available are:

  • Aromatherapy
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St Francis Hospice Inpatient Unit
Close

St Francis Hospice Inpatient Unit

T. 01708 723593 / 01708 753319 ext. 2317

W. https://www.sfh.org.uk/the-hospice-ward

For patients requiring specialist in-patient care for symptom management and end of life care.

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Close

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T. 01708 753319  ext. 2220

W. https://www.sfh.org.uk/patient-therapies

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Close

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T. 01708 758606

W. https://www.sfh.org.uk/make-a-referral

The St Francis Hospice's referral hub can be accessed by those facing a life limiting condition. 

Please refer a patient or making a self-referral to access hospice services.

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Close

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T. 01708 758643 / 01708 758610 ext. 2266

W. https://www.sfh.org.uk/crisis-support

The team are clinical specialists that are experts in pain and symptom control.

Urgent advice ia available 24 hours, 365 days a year.

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Close

St Luke's Hospice Clinical Outpatients team offers convenient, accessible and specialist key clinical procedures and palliative care, in a relaxed environment with appointments to meet your wellbeing and lifestyle needs. 

Key clinical procedures offered to outpatients:

  • Advance Care Planning clinics
  • Ascetic and Pleural drainage
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Close

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Close

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There are a total of 7 beds and 1 emergency bed in Basildon.

Hospice Rapid Access Service (HRAS) with 6 Beds in Thurrock.

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Close

St Luke's Hospice Physiotherapy team can help when living with a life limiting illness.  Specialist Physiotherapists and Occupational Therapists will listen and assess to support independence and aid mobility to manage symptoms and positively impact quality of life and wellbeing.

Family and loved ones are also supported in their caring roles. Advice, guidance and techniques on how to safely move and handle someone when caring for them can be accessed through conversation with the Physiotherapy team.

The offer includes:

  • individual assessments to help provide appropriate equipment, e.g. mobility aids
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W. https://www.stlukeshospice.com/bereavement-support

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T. 01268 524973

W. https://www.stlukeshospice.com/lymphoedema-support

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Tissue Viability Service: North East London Foundation Trust
Close

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T. 0300 300 1831 ext. 52798

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Pharmacies

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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.

British Lymphology Society
Close

The British Lymphology Society provides a directory of Lymphoedema treatment services.

Use the website address above to find your local services.

Colostomy UK
Close

Information and support about stoma care. There is a 24 hour helpline.

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Close

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T. 01375 641569

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Address: Hassengate Medical Centre, Southend Road, Stanford-le-Hope, SS17 0PH

Opening hours: Monday 8.00am to 10.30pm. Tuesday 7.00am to 10.30pm. Wednesday to Saturday 8.00am to 10.30pm. Sunday 9.00am to 10.00pm.

Hospice Rapid Access Service (HRAS)
Close

The Hospice Rapid Access Service team is a 24 hour services for people with a primary health need, who are rapidly deteriorating, and likely to be entering the terminal/palliative care phase of their illness. 

Havens Hospices, St Lukes Hospice and Farleigh Hospice work together as a collaborative to ensure consistency of care across all of Mid and South Essex.

The Hospices will assess the care needs of the patient and source care that meets the holistic needs of the patient.  This could be care in the home, on an in-patient unit, or in a Nursing Home.

Havens Hospices – havenshospices.rapidaccess@nhs.net (Southend, Castle Point and Rochford)

Farleigh Hospice -  contactteam.fh@nhs.net (Chelmsford, Maldon and the Dengie, Braintree and the surrounding areas)

St Luke’s Hospice - Stlukes.oneresponse@nhs.net (Basildon and Thurrock)

Hospice UK
Close

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

Ileostomy and Internal Pouch Association (IA)
Close

Ileostomy and Internal Pouch Association (IA)

T. 0800 0184 724

W. https://iasupport.org/about/about-ia/

Ileostomy and Internal Pouch Association, known as IA, has been specialising in supporting people living with an ileostomy.

IA has not only an extensive network of local groups across the UK and Ireland but also the majority of volunteers are living life after surgery.

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.

LymphConnect
Close

LymphConnect is an online platform developed to help manage lymphoedema or lipoedema, understand more about the condition, share experiences and get support and advice.

 

St Francis Hospice at Home
Close

St Francis Hospice at Home

T. 01708 758603 / 01708 753319 Ext: 2342

W. https://www.sfh.org.uk/hospice-at-home

The Hospice at Home team offers blocks of care to people in their last few weeks of life. The blocks are usually between two and four hours and in some circumstances the blocks can run sequentially to provide a dying person with almost 24 hour care. The Hospice at Home team offers care for 7 days a week. 

St Francis Hospice Complementary Therapy
Close

St Francis Hospice Complementary Therapy

T. 01708 753319 ext. 2268

W. https://www.sfh.org.uk/patient-therapies

Complementary therapies can help control symptoms and help to deal with day-to-day life.

The therapies available are:

  • Aromatherapy
  • Massage
  • Reflexology
  • Mindfulness
  • Reiki
St Francis Hospice Inpatient Unit
Close

St Francis Hospice Inpatient Unit

T. 01708 723593 / 01708 753319 ext. 2317

W. https://www.sfh.org.uk/the-hospice-ward

For patients requiring specialist in-patient care for symptom management and end of life care.

St Francis Hospice Patient Therapies
Close

St Francis Hospice Patient Therapies

T. 01708 753319  ext. 2220

W. https://www.sfh.org.uk/patient-therapies

The patient therapies team help with a range of symptoms through groups and individual sessions to help managing pain and symptoms.

The team consistes of:

  • Physiotheraphy
  • Occupational therapy
  • Complementary therapy
St Francis Hospice Referral Hub
Close

St Francis Hospice Referral Hub

T. 01708 758606

W. https://www.sfh.org.uk/make-a-referral

The St Francis Hospice's referral hub can be accessed by those facing a life limiting condition. 

Please refer a patient or making a self-referral to access hospice services.

St Francis Hospice Specialist Community and Crisis Support
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St Francis Hospice Specialist Community and Crisis Support

T. 01708 758643 / 01708 758610 ext. 2266

W. https://www.sfh.org.uk/crisis-support

The team are clinical specialists that are experts in pain and symptom control.

Urgent advice ia available 24 hours, 365 days a year.

St Luke's Hospice Clinical Outpatients
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St Luke's Hospice Clinical Outpatients team offers convenient, accessible and specialist key clinical procedures and palliative care, in a relaxed environment with appointments to meet your wellbeing and lifestyle needs. 

Key clinical procedures offered to outpatients:

  • Advance Care Planning clinics
  • Ascetic and Pleural drainage
  • Blood product transfusions
  • Clinical Nurse Specialist symptom management clinic
  • CVC line care
  • Intravenous fluids
  • IV Bisphosphonates infusions
  • IV Iron Infusions
  • Long term condition clinic – supporting heart failure, renal and liver conditions
  • Venepuncture

The service opening hours are 9.00am to 5.00pm.

St Luke's Hospice Community Service
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St Luke's Hospice community service provides assessment, support advice and care for people wishing to be cared  and supported in their locality community setting. The team also provide support in care homes, the hospice's rapid access service and there is the provision of clinical nurse specialists.

St Luke's Hospice In Patient Unit
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St Luke's Hospice provide specialist in-patient care for symptom management and end of life care.        

There are a total of 7 beds and 1 emergency bed in Basildon.

Hospice Rapid Access Service (HRAS) with 6 Beds in Thurrock.

St Luke's Hospice Physiotherapy Support
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St Luke's Hospice Physiotherapy team can help when living with a life limiting illness.  Specialist Physiotherapists and Occupational Therapists will listen and assess to support independence and aid mobility to manage symptoms and positively impact quality of life and wellbeing.

Family and loved ones are also supported in their caring roles. Advice, guidance and techniques on how to safely move and handle someone when caring for them can be accessed through conversation with the Physiotherapy team.

The offer includes:

  • individual assessments to help provide appropriate equipment, e.g. mobility aids
  • personalised treatment plans including non-drug pain relief treatments and exercises to improve mobility, independence and balance
  • treatments to assist with shortness of breath, fatigue or insomnia
  • group exercise classes and confidence building

Rehabilitative care is also provided by our Occupational Therapy team. 

St Luke's Hospice Pre & Post Bereavement Support
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St Luke's Hospice Pre & Post Bereavement Support

T. 01268 526259

W. https://www.stlukeshospice.com/bereavement-support

The Dove Community Counselling Service team at St Luke's Hospice offer bereavement support to adults living with a life limiting illness, from diagnosis through to end of life or into survivorship. 

Bereavement support is also available to those who may have experienced a bereavement from suicide, sudden, traumatic or accidental deaths, or within the last 5 years due to a life limiting illness.

St Luke's Hospice South Essex Lymphoedema Service (SELS)
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St Luke's Hospice South Essex Lymphoedema Service (SELS)

T. 01268 524973

W. https://www.stlukeshospice.com/lymphoedema-support

St Luke's Hospice provides the specialist Lymphoedema care team could provide care to you if you are living with primary Lymphoedema, secondary Lymphoedema and Lipoedema. The team can provide clinical expertise, support and practical help for those with any these conditions and live across South Essex.

Tissue Viability Service: North East London Foundation Trust
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Tissue Viability Service: North East London Foundation Trust

T. 0300 300 1831 ext. 52798

This service is for any persons over the age of 18 and supports the management of complex wound care, via clinic based appointments, or homevisits depending on the need of the service user.

Child palliative care teams

Hospice Rapid Access Service (HRAS)
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The Hospice Rapid Access Service team is a 24 hour services for people with a primary health need, who are rapidly deteriorating, and likely to be entering the terminal/palliative care phase of their illness. 

Havens Hospices, St Lukes Hospice and Farleigh Hospice work together as a collaborative to ensure consistency of care across all of Mid and South Essex.

The Hospices will assess the care needs of the patient and source care that meets the holistic needs of the patient.  This could be care in the home, on an in-patient unit, or in a Nursing Home.

Havens Hospices – havenshospices.rapidaccess@nhs.net (Southend, Castle Point and Rochford)

Farleigh Hospice -  contactteam.fh@nhs.net (Chelmsford, Maldon and the Dengie, Braintree and the surrounding areas)

St Luke’s Hospice - Stlukes.oneresponse@nhs.net (Basildon and Thurrock)

Little Havens Hospice
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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.

St Francis Hospice at Home
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St Francis Hospice at Home

T. 01708 758603 / 01708 753319 Ext: 2342

W. https://www.sfh.org.uk/hospice-at-home

The Hospice at Home team offers blocks of care to people in their last few weeks of life. The blocks are usually between two and four hours and in some circumstances the blocks can run sequentially to provide a dying person with almost 24 hour care. The Hospice at Home team offers care for 7 days a week. 

St Francis Hospice Specialist Community and Crisis Support
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St Francis Hospice Specialist Community and Crisis Support

T. 01708 758643 / 01708 758610 ext. 2266

W. https://www.sfh.org.uk/crisis-support

The team are clinical specialists that are experts in pain and symptom control.

Urgent advice ia available 24 hours, 365 days a year.

St Luke's Hospice Community Service
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St Luke's Hospice community service provides assessment, support advice and care for people wishing to be cared  and supported in their locality community setting. The team also provide support in care homes, the hospice's rapid access service and there is the provision of clinical nurse specialists.

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