Victor Frankl, 1946: “Life has a meaning up to the last moment, and it retains this meaning literally to the end.”

Symptom management at the end of life requires comprehensive, ongoing assessment and care that recognises the person's values, wishes and priorities. It must address physical, psychological, social, and spiritual needs through close collaboration with families, carers, and the wider health care team.

Uncontrolled symptoms can lead to avoidable suffering, emotional distress and even loss of trust in the health care team. These uncontrolled symptoms can also lead to unresolved symptom management and can trigger patients wanting to discuss assisted dying; therefore, it is important to clarify what is being asked or sought.

These include:

• Assessment and identification of the cause of the symptom before planning its management.
• Treat potentially reversible causes where appropriate.
• Always considering non-pharmacological approaches, as these can be as important as pharmacological measures.
• Management plans should be individualised, informed by patient choice and tailored to the therapeutic goal.
• These should be reviewed regularly as needs may change rapidly, especially in the last hours and days of life.

We know that distress from pain and symptoms can be relieved with expert palliative care and symptom control. While individuals may also present with symptoms specific to their underlying conditions, our focus here is on symptoms that are commonly seen in the dying phase. They include:

• pain
• breathlessness
• nausea and vomiting
• constipation
• respiratory secretions
• anxiety, delirium, agitation.

Pain is a complex, multi-dimensional experience that is unique to every individual. It impacts all aspects of a person's life. The experience of pain was captured by Dame Cicely Saunders (2022 p.1) as she described the “total pain” experience. This recognises that the experience of pain comprises physical, psychological, social and spiritual aspects.

Nurses play a vital role in the recognition, assessment and management of pain. You are in the best position to advocate for patients to ensure they have access to adequate pain control. Relief from pain is a basic human right and can significantly improve the quality of life of the individual and those around them. To understand the role of the nurse in managing pain, listen to this podcast from the Nursing Standard.

The first step in developing a management plan is to complete a holistic assessment of the individual that captures their total pain experience. A good pain assessment should be tailored to the individual's needs. While there are a variety of assessment tools, it’s important to select one that you, as the assessor, are comfortable with and one that the patient can review as well. Acronyms such as the one illustrated below can be helpful when assessing pain.

• Site.
• Onset.
• Character.
• Radiation.
• Associated symptoms.
• Timing.
• Exacerbating and relieving factors.
• Severity.

While these acronyms can help assess pain, it is important to consider the whole pain experience and ensure your assessment also captures the psychological, social, and spiritual aspects. At the heart of any symptom management is a holistic assessment. Once you have established the total pain experience, a management plan can be developed that addresses all its dimensions. (Galligan 2021).

Pharmacological management

The management plan should be multi-modal. There are non-pharmacological and pharmacological techniques that can help to treat pain, and most patients’ pain can be managed well. There are a variety of resources and guidelines that can help manage pain. When developing your management plan, ensure you follow local pain and palliative care guidelines, as well as national guidelines, such as the National Institute for Health and Care Excellence (NICE) Palliative cancer care – pain.

Non-pharmacological management

There are a variety of interventions that can be used as part of the non-pharmacological management of pain. The evidence base for many of these interventions is limited. However, it is important to include their use as part of a multimodal plan, as they can provide significant benefit. When identifying non-pharmacological interventions, it is important to involve the individual so they can take ownership of them and use them when needed. These interventions can include:

• mindfulness
• hot/cold therapy
• TENs machine
• distraction techniques (for example, music therapy)
• art therapy
• physiotherapy
• massage
• acupuncture
• Cognitive Behavioural Therapy (CBT).

Further information

• Palliative care for adults: strong opioids for pain relief. NICE
• Rattner M (2023) ‘Total pain’: reverence and reconsideration, Frontiers in Sociology, 8. (Accessed 10th October 2024 )
  
• Terminology. International Association for the Study of Pain
• European Pain Federation-Neuropathic Pain Special Interest Group of the International Association for the Study of Pain guidelines on neuropathic pain assessment. Eur J Neurol. 2023 Aug;30(8):2177-2196. https://onlinelibrary.wiley.com/doi/10.1111/ene.15831
• Schofield P, Docking R, Cox F et al (2018) The Assessment of Pain in Older People: UK National Guidelines. Age & Ageing. Mar 1;47(suppl_1): i1-i22
• Royal Marsden Manual 2020.

Breathlessness/dyspnoea is a subjective experience of discomfort in breathing and can severely impact a person’s quality of life. Breathlessness can cause fear that can result in increased anxiety and create a vicious cycle.

Breathlessness is an interaction between the body and mind. It is a multidimensional experience that often involves physical, emotional, psychological, and spiritual factors. Effective assessment is essential and must combine clinical observation with a deep understanding of the patient.

Assessment should include:

• the patient’s description (for example, "air hunger," "tight chest").
• severity scoring (for example, Modified Borg Scale, Numerical Rating Scale).
• respiratory pattern: rate, rhythm, use of accessory muscles.
• impact on daily activities, mobility and sleep.
• psychological impact: anxiety, fear, or existential distress.
• contributory or reversible factors:
  • anaemia
  • pulmonary oedema
  • infection
  • pleural effusion
  • ascites
  • neuromuscular weakness.

Non-pharmacological management

• Handheld fan directed at the face stimulates the trigeminal nerve and reduces the sensation of breathlessness.
• Breathing techniques: Pursed-lip breathing, diaphragmatic breathing.
• Calm reassurance: Soft tone, unhurried presence, grounded body language.
• The ‘Calming Hand’ technique: Gentle hand placement and grounding during panic episodes.
• Upright positioning: Sitting supported or high Fowler’s position.
• Open windows, fresh air flow or minimal room crowding.
• Music therapy, visualisation or mindfulness exercises.
• Chaplaincy support teams for existential or spiritual distress.

Pharmacological management

When breathlessness persists or significantly impacts quality of life, especially in the last days of life, pharmacological treatment is often necessary.

Treatment should be individualised, and reversible causes ruled out where appropriate. Consult the local symptom control guideline and palliative care team for advice.

Further information

• Marie Curie. Breathlessness in palliative care: information for professionals (2021)
• Palliative Care Matters
• Right Decisions. Breathlessness.

Nausea is defined as the unpleasant subjective feeling of wanting to vomit, while vomiting is the physical act of expelling gastric contents. Poorly controlled nausea and vomiting can result in physical and psychosocial distress.

It is important to assess what the likely causes of these can include:

• medications
• psychological causes such as anxiety
• recent chemotherapy or radiotherapy
• biochemical causes, such as hypercalcaemia
• raised intracranial pressure
• constipation
• bowel obstruction.

Non-pharmacological management

• Address underlying causes (relieve constipation, reduce opioid dose).
• Create a calm, low-stimulation environment.
• Offer small, frequent, bland meals if oral intake is still appropriate.
• Minimise strong odours and intrusive sounds.
• Encourage upright positioning after eating.
• Consider aromatherapy if appropriate and accepted.
• Provide reassurance and emotional support—particularly for anticipatory nausea or existential distress.

Pharmacological management

When symptoms persist or escalate, pharmacological intervention is usually required. Treatment must be cause-specific and regularly reviewed for effectiveness and tolerability. Seek further information from local symptom control guidelines and the palliative care team.

Further information

• NHS England – Palliative and End of Life Care: National guidance and resources for England.
• NHS Scotland – Palliative Care Guidelines: The Scottish Palliative Care Guidelines, widely used across Scotland.
• NHS Wales – Palliative Care: Guidance and resources for symptom control and palliative care in Wales.
• Northern Ireland – Palliative Care Guidelines: Regional guidance and resources for Northern Ireland.
• Marie Curie (2021) - Nausea and vomiting in palliative care: information for healthcare professionals.
• McKechnie D (2023) - Nausea and vomiting in palliative care: patient.
• Right Decisions - Nausea and vomiting.

The difficult or painful passage of stools is called constipation. It is associated with infrequent bowel motions with small, hard faeces. Constipation is a distressing and painful symptom and can dramatically impact on quality of life.

Constipation is a subjective experience, so it is important to assess each patient's normal bowel pattern.

At the end of life, constipation can have a significant physical and psychological impact, causing discomfort, nausea, agitation, and in some cases, confusion or urinary retention. In more advanced cases, complications such as faecal impaction or overflow diarrhoea may occur.

Common causes of constipation at the end of life include:

• opioids (slowing gut motility and water absorption)
• other medications (ondansetron, iron, antacids, Parkinson’s medications)
• low fluid intake, dehydration
• reduced mobility
• poor dietary fibre intake
• neurological conditions (MS, spinal cord compression)
• lack of privacy or reduced ability to toilet independently.

Assessment should include:

• the person’s normal bowel pattern
• date and description of last bowel motion
• stool consistency using the Bristol Stool Chart
• symptoms such as abdominal discomfort, bloating, straining or nausea
• potential overflow diarrhoea or signs of faecal impaction
• abdominal examination if appropriate and acceptable
• review of medications and fluid/food intake.

Non-pharmacological management

• Encourage adequate hydration, where clinically appropriate.
• Support intake of soft, regular meals with fibre (as tolerated).
• Promote mobilisation, including passive movement or supported walking.
• Maintain privacy and comfort during toileting, especially in unfamiliar or shared care environments.
• Educate the patient (and carers) about recognising early signs of constipation.

Pharmacological management

When constipation is persistent or distressing, pharmacological treatment is necessary. Constipation is a common side effect of opioids, with 90% of all patients taking opioids requiring laxatives. It is best practice to start laxatives early when opioids are initiated. The aim of laxative therapy is to promote the comfortable passing of bowel motions. Seek advice from local symptom control guideline and palliative care team.

Further information

• Marie Curie. Constipation in palliative care
• Right Decisions. Constipation.

Noisy respiratory secretions - commonly referred to as the “death rattle” - are caused by the accumulation of oropharyngeal or bronchial fluids that the dying person can no longer clear due to reduced consciousness and the swallowing reflex. These secretions typically occur in the final hours or days of life and, while usually not distressing to the patient, they can cause significant anxiety and emotional distress for family and carers.

Timely recognition and sensitive management are essential to maintain comfort, dignity and reassurance during the dying phase. Supporting relatives with clear, compassionate communication is just as important as clinical intervention.

Assessment should include:

• onset and progression of noisy secretions (new or persistent)
• level of consciousness (unconscious, semi-conscious, aware)
• swallowing reflex and cough effectiveness
• respiratory pattern and rate
• hydration status (especially in those receiving IV or SC fluids)
• positioning and airway patency
• family or carer reactions to the noise and symptom.

It is important to document if the patient is distressed or comfortable to avoid unnecessary interventions. Suctioning is not routinely recommended unless there is a visible obstruction in the mouth and it is causing distress. Deep suctioning can worsen discomfort, stimulate more secretions, and is rarely effective in the dying phase. Read the Scottish Palliative Care Guidelines, which includes information on symptom management and pain, along with a more comprehensive toolkit.

Non-pharmacological management

• Repositioning: Turning the patient onto their side (semi-prone) often improves drainage and reduces noise.
• Reduce or stop artificial fluids: IV or subcutaneous hydration can worsen secretions in the dying phase.
• Mouth care: Regular cleaning and swabbing to remove pooled secretions.
• Minimise invasive interventions: Avoid deep suctioning unless necessary.
• Family support:
  • Reassure that the sound is not usually distressing to the patient.
  • Explain that this is a natural part of the dying process.
  • Offer emotional support and answer questions sensitively.

Pharmacological management

It is only appropriate to treat this symptom if it is causing the patient distress and they are not bothered by dry mouth. If non-pharmacological measures do not sufficiently reduce secretions, medications may be prescribed. Consult the local symptom control guideline and palliative care team for advice. For more information on this topic, watch the video ‘Dying For Beginners’, presented by Dr Kathryn Mannix.

Further information

• NICE. Palliative care - secretions.