Some of these aspects will be harder to identify and assess when consciousness is impaired or communication barriers are present.

Biological

• Substance withdrawal
• Medication
  
  • opioids
  • corticosteroids
  • serotonin syndrome
  • withdrawal
• Pain, discomfort
• Urine retention
• Constipation
• Dehydration
• Hypoxia
• Metabolic
  
  • urea
  • creatinine
  • glucose
  • calcium
  • sodium
• Raised inter-cranial pressure such as metastasis or bleeds
• Alcohol intoxication or withdrawal
• Infection, sepsis
• Organ failure.

Social

• Relationship changes
• Financial concerns
• Work concerns.

Psychological and spiritual

• Grief
• Anger
• Fear
• Adjustment
• Existential concerns.

Delirium is characterised by the abrupt onset of fluctuating confusion, altered attention, reduced consciousness and reduced awareness of the environment. (Hosker 2016, Brown et al 2021).

Symptoms can affect different areas of cognition, such as memory, orientation, language and perception, and may also include hallucinations and disturbances to the sleep-wake cycle.

Delirium can vary in duration, resolving within days for most people, but for some people it can last for weeks or months. Strategies to prevent and reverse delirium are the cornerstones of optimal care. However, delirium in advanced illness may indicate poor prognosis; therefore, distinguishing delirium in a person who is imminently dying with reversible delirium is a key clinical challenge.

The symptoms at the end of someone’s life can be distressing for patients, their friends and families and often for the professionals caring for them. They may include the following:

• myoclonic jerks
• impaired consciousness
• hallucinations, paranoia
• disorientation, memory deficit, confusion, language and communication challenges, altered perception, irritability
• reduced ability to focus the patient on the environment
• sleep-wake disturbance.

Delirium is an important clinical issue at the end of someone’s life, which is prevalent in those with advanced life-limiting illness (Hosie et al 2017, Agar and Bush 2020, Brown et al. 2021). In people with advanced illness, delirium is an independent predictor of mortality and often signals the transition into the person's last hours or days of life.

Delirium can be distressing to patients and their friends and families. It affects the patient’s ability to communicate with loved ones at a critical time, when this is highly valued. It can also affect the ability to voice preferences, wishes, and to be involved in shared decision-making.

There is a contradictory view that palliative care and dying patients are different from the broader population who suffer from delirium. Under recognition can be attributed to the lack of assessment and screening of delirium.

Delirium and agitation, along with other related nonspecific terms, are terms used interchangeably through research and literature. Research suggests that clinicians conceptually link delirium with dying, diminishing its significance and severity, which contributes to its under recognition and limited management.
There are concerns that those at the end of life are not getting the best care due to optimal delirium care underpinned by evidence (Hosie et al. 2017, Agar and Bush 2020).

Due to the limited understanding of delirium within palliative care. This contributes to the dominant focus on symptom management rather than on prevention, early identification, and modification of possible causes. This potentially denies the patient and family time and the opportunity to address what is important to them.

The most challenging aspect for clinicians caring for those with delirium is to ascertain whether the symptoms of delirium can be reversed or whether the person is imminently dying. In many cases, these two populations can present very similarly; therefore, a comprehensive assessment is crucial.

Assessment

It's important to fully assess the symptoms contributing to the person's delirium experience using a validated tool. This will assist health care professionals in determining an individualised management plan to relieve distress. Assessment should include a history, drawing on any communication from health care professionals involved in the patient’s care, as well as observations from friends and family.

A systematic enquiry to look for signs of treatable illness or disease progression should be undertaken. Physical examination and investigations should be based upon the clinical picture with consideration of the patient’s wishes. Acknowledgement of any anticipatory care plans, advanced directives or written wishes made by the patient is vital. This will help to take into consideration the location of care, treatment, interventions and any social, spiritual, psychological preferences and wishes, along with any physical ones.

Management

Clinicians need to balance the distress caused by the symptoms of delirium with care planning and management of symptoms which align with the person's needs and preferences. Clear, open and honest information for patients and their informal caregivers, including shared decision-making, acts as a crucial element of any management plan.

Delirium and terminal agitation are often treated first with medication, despite limited evidence of safety or effectiveness and wide variation in prescribing. There has been little research into nonpharmacological prevention for the management of delirium in the palliative care setting, and there is a limited number of trials investigating its management with medication.

Non-pharmacological management (non-medication) approaches to managing delirium at the end of life

• Avoid using restraints or anything that restricts movement.
• Look for and treat possible causes of delirium.
• Manage other medical conditions as effectively as possible.
• Adjust the patient’s position or surroundings to match their preferences. This might include using their own clothes, bedding, toiletries, photos, familiar objects, music, or television.
• Offer regular reassurance to help the patient feel safe.
• Encourage companionship. Allow family, friends, or other important people in the patient's life to spend time with them and provide support.
• Create a calm environment for sleep. Reduce noise, dim lights at night, limit interruptions, and, if possible, move the patient to a single room with familiar staff.
• Support the patient’s senses. Check that hearing aids and glasses are working, provide good lighting during the day, and use clocks or photos to help with orientation.
• Maintain basic care.

(Adapted from the Scottish Palliative Care Guidelines, Healthcare Improvement Scotland, 2024.)

Medication for delirium at the end of life

• Treat reversible causes where possible, in line with the patient’s wishes.
• Use medication if needed to ease distress and manage symptoms.
• Choose the most suitable route for medication. Options include oral, sublingual, or injectable. Decisions should be made with the patient and guided by any advance directives. If swallowing becomes difficult, medicines are usually given by injection or via a syringe pump (syringe driver). This often indicates the patient is entering the active dying phase.
• Follow local clinical guidance to ensure safe and consistent practice.
• Seek specialist input from palliative care teams when appropriate.

Communicating with family members

Delirium-related symptoms, especially agitation, can cause marked distress to both patients and families. Friends and family play a vital role in delirium care.

To support families, professionals should communicate about delirium with clarity and sensitivity. Information should be shared regularly and explained in plain terms, covering the prognosis and goals of care. Families should also be given the choice to be involved—whether through companionship or by helping to care for their loved one.

Further information

• Health Improvement Scotland. Right Decision Service. 2018. Scottish Delirium Associate (SDA)
• 4AT - Rapid Clinical Test for Delirium Detection. The tool was developed and validated in Scotland in non-intensive care settings and is now widely adopted
• End-of-life Care for All (e-ELCA) - eLearning for healthcare
  
• Palliative Adult Network Guidelines
  
• Healthcare Improvement Scotland (no date) Scottish Palliative Care Guidelines: Pain
• Marie Curie (2022) Pain management in palliative care: information for healthcare professionals
• RPMG 2023 Guidance for management of symptoms in adults in the last days of life (Northern Ireland).