End Of Life Care

Overview

End of life care is support for people who are thought to be in the last months or weeks of life, and for the people who care for them. It focuses on comfort, dignity and quality of life rather than curing illness. It can include relief from pain and other symptoms, emotional and spiritual support, and help with practical matters. It is sometimes called palliative and end-of-life care.

Many people will need end of life care at some point, often because of an advanced illness or frailty. It is a normal and important part of healthcare.

It can affect anyone with an advanced illness or frailty, at any age, including children. It also affects family members, friends and carers.

Symptoms

Common symptoms

• Pain or discomfort that may change over time
• Breathlessness or a feeling of not getting enough air
• Tiredness, weakness, or needing to rest more
• Changes in eating and drinking, such as wanting less
• Nausea, vomiting, constipation, or a dry mouth
• Sleepiness, confusion, or changes in alertness
• Anxiety, low mood, fear, or feeling unsettled
• Noisy breathing or chest mucus that can be distressing to hear
• Skin changes, such as dryness or pressure areas

Symptoms in children

• Children may show distress by being clingy, irritable, very quiet, or asking repeated questions
• They may have changes in eating, sleeping, play, or energy
• They may have pain or breathlessness that they cannot easily describe
• Children need gentle, honest explanations at a level they can understand
• Specialist children’s palliative care teams can help with symptoms and family support

Symptoms in older adults

• Older adults may become frail quickly or have more than one long-term condition
• Confusion or drowsiness can be a sign of delirium, which is a sudden change in thinking or alertness
• They may have repeated infections, falls, or skin breakdown
• They may eat and drink less, which can be a natural part of dying but should be discussed with the care team
• Pressure sores and mouth problems are more common and can often be prevented or eased

Causes

Main causes

• End of life care is not caused by one disease. It is needed when a person has an advanced illness or frailty that is likely to shorten life.
• Advanced cancer
• Dementia or other long-term brain conditions
• Heart, lung, kidney, or liver failure
• Progressive neurological conditions, such as motor neurone disease or advanced Parkinson’s
• Frailty, especially when someone has several long-term conditions and is losing weight or function

Risk factors

• Having a serious illness that is getting worse
• Becoming frailer, with more falls, infections, or hospital stays
• Losing weight or muscle strength without trying
• Needing more help with daily activities such as washing, dressing, or eating
• Having several long-term health conditions
• Living alone or having limited support, which can make coping harder

When to see a doctor

See a doctor urgently if:

• Symptoms are not controlled by the current care plan, or the person is very distressed
• There is a sudden change in breathing, alertness, or behaviour
• The person cannot keep fluids down, is not passing urine, or seems dehydrated
• There are signs of infection, such as fever or shivering
• A pressure sore, wound, or skin problem is getting worse
• You or another carer feel unable to cope or unsafe

Book a routine appointment if:

• You want to talk about future care, even if you feel well now
• Someone has been diagnosed with a serious illness and wants to understand what support is available
• You want help making an advance care plan, which records wishes for future care
• The person’s needs or wishes have changed
• Family members or carers need information, respite, or emotional support

Diagnosis

There is no single test for needing end of life care. A healthcare team recognises that end of life care may be helpful when a person has an advanced illness, is becoming frailer, and their symptoms or daily function are changing. The team talks with the person and their family about goals, values, and what matters most.

Tests that may be done

• A review of the person’s medical history and current illnesses
• A physical examination and assessment of symptoms
• A review of medicines to make sure they are still helpful
• Conversations about wishes, values, and advance care planning
• Blood tests or scans only if they would help guide care and fit the person’s goals
• Input from specialist palliative care teams when needed

What to expect at your appointment

The team will usually talk with the person and family together. They will ask what is important, such as staying at home, being free from pain, or having spiritual support. A care plan is made and reviewed regularly as needs change. Culture, beliefs, and family wishes should be respected.

Treatment

The goal of end of life care is comfort, dignity, and quality of life. Care is tailored to the person and may include relief from pain and other symptoms, emotional and spiritual support, help with practical matters, and support for family and carers. Care can be provided by a GP, community nurses, hospice teams, hospital teams, and specialist palliative care services.

Self-care at home

• Share your wishes early with family and the healthcare team
• Keep a written care plan and important contact details where carers can find them
• Ask about practical help, such as equipment, home visits, or respite care
• Use comfort measures such as gentle repositioning, keeping the mouth moist, and a calm room
• Accept help from friends, family, and local services
• Keep small routines and pleasant activities that bring comfort when possible

Medical treatments

The care team may use medicines to ease pain, breathlessness, nausea, anxiety, and chest or throat secretions. They may also use non-medicine methods such as gentle positioning, fans, relaxation, mouth care, and physiotherapy. Treatments are chosen to fit the person’s goals and are reviewed often. Specialist palliative care teams can help if symptoms are difficult to control.

When is surgery considered?

Surgery is not usually part of end of life care itself. Sometimes a procedure may be considered if it would clearly relieve a specific symptom and fits the person’s goals, but this is decided case by case with the healthcare team.

Living with this condition

Day to day, the focus is on comfort and what matters most to the person. This may mean small visits, favourite music, spiritual practices, or quiet rest. Carers should share tasks, take breaks, and ask the care team for help when needs change. Keep the care plan up to date and make sure everyone knows what to do if symptoms worsen.

Lifestyle tips

• Keep a simple symptom diary to help the care team adjust support
• Keep important phone numbers and the care plan in one place
• Accept offers of help with meals, shopping, childcare, or transport
• Continue gentle activity or movement if it is comfortable
• Keep up mouth care and skin care to prevent discomfort
• Make space for rest, privacy, and cultural or spiritual practices

Diet and exercise

Eating and drinking often naturally reduce near the end of life. Offer small amounts, sips, or ice chips if the person wants them, but do not force food or drink. Gentle movement, changing position, or light massage can help comfort if the person is able. Ask the care team or a physiotherapist or occupational therapist for advice.

Mental health and emotional wellbeing

It is normal to feel grief, fear, anger, sadness, or uncertainty. Family members and carers may feel exhausted or overwhelmed. If you or someone you care for has thoughts of self-harm or feels unsafe, contact your local emergency number or a crisis support service straight away. Counselling, spiritual support, and palliative care teams can help with emotional distress.

Prevention

End of life care itself cannot be prevented, because it is a normal part of care for some serious illnesses. But distress can be reduced by planning early, talking about wishes, making an advance care plan, choosing someone to speak for you if needed, treating symptoms early, and supporting carers.

Vaccines

Not applicable to end of life care itself. Routine vaccines may still be discussed if they could prevent an avoidable illness and fit the person’s goals.

Screening programmes

Not applicable. The focus is on comfort and the person’s goals, not on screening for new conditions unless it would clearly change the care plan.

Complications

If left untreated

• Uncontrolled pain, breathlessness, nausea, or other distressing symptoms
• Emotional and spiritual distress for the person and family
• Carer exhaustion and feeling unable to cope
• Crisis hospital admissions that may not match the person’s wishes
• Family disagreements or uncertainty about what the person wanted
• Less chance to receive care in the place the person chose

Long-term outlook

With good support, many people can be kept comfortable and cared for with dignity. End of life care does not mean giving up; it means focusing on what matters most to the person. Support is available for families and carers too, and the care plan can change as needs change.

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