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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W. https://www.mse.nhs.uk/acute-oncology-service-aos

This service is available Monday to Friday from 9.00am to 10.00pm. Saturday and Sunday 9.00am to 5.00pm. Clinicians can call the Oncology Registrar on-call at Southend Hospital bleep 4001.

Outside of these hours clinicians can call the Oncology Consultant on call via Southend Hospital switchboard on 01702 435555.

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W. https://www.mse.nhs.uk/acute-oncology-service-aos

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Close

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T. 01702 435555

W. https://www.mse.nhs.uk/acute-oncology-service-aos

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

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Close

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T. 01702 435555

W. https://www.mse.nhs.uk/acute-oncology-service-aos

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Outside of these hours clinicians can call the Oncology Consultant on call via Southend Hospital switchboard on 01702 435555.

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Close

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Close

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

Use the website address above to find your local services.

Community Wound Care Team: Essex Partnership University Trust
Close

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The team works with healthcare staff in all aspects of the prevention and management of acute and chronic wounds, with specific focus on those patients with hard to heal, complex and/or problematic wound care.

The Tissue Viability and Complex Leg Ulcer Services are part of the community service provided by this team.

Please compete the SystmOne referral form if available.

Referral form for clinician use only.

EPUT Community Wound Care Referral form (DOCX)
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Close

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

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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.

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.

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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.

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

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Close

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Close

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Close

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T. 01268 524973

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

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Close

All calls are answered by a senior triage nurse in the Single Point of Access, who will assess the case and advise if the service is able to stabilise and manage the patient.

The rapid resonse team aim to visit the patient within two hours.

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Acute Oncology Team: Southend Hospital
Close

Acute Oncology Team: Southend Hospital

T. 01702 435555

W. https://www.mse.nhs.uk/acute-oncology-service-aos

This service is available Monday to Friday from 9.00am to 10.00pm. Saturday and Sunday 9.00am to 5.00pm. Clinicians can call the Oncology Registrar on-call at Southend Hospital bleep 4001.

Outside of these hours clinicians can call the Oncology Consultant on call via Southend Hospital switchboard on 01702 435555.

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Close

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T. 01268 776479

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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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T. 01702 612003

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Community Wound Care Team: Essex Partnership University Trust
Close

Community Wound Care Team: Essex Partnership University Trust

The team works with healthcare staff in all aspects of the prevention and management of acute and chronic wounds, with specific focus on those patients with hard to heal, complex and/or problematic wound care.

The Tissue Viability and Complex Leg Ulcer Services are part of the community service provided by this team.

Please compete the SystmOne referral form if available.

Referral form for clinician use only.

EPUT Community Wound Care Referral form (DOCX)
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T. 01702 715558

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Opening hours: Monday to Friday 8.00am to 11.00pm. Saturday 8.00am to 9.00pm. Sunday 8.00am to 11.00pm.

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Close

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

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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.

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 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.

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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.

 

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.

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

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.

Urgent Community Response Team
Close

All calls are answered by a senior triage nurse in the Single Point of Access, who will assess the case and advise if the service is able to stabilise and manage the patient.

The rapid resonse team aim to visit the patient within two hours.

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