When faced with a terminal diagnosis or caring for a loved one approaching the end of their life, understanding the end of life pathway stages becomes crucial for ensuring dignified and compassionate care. In the UK, significant developments have reshaped how we approach End of Life Care, offering families more choice, better coordination and increased support.
The End of Life Care pathway, also known as the palliative pathway, is a structured approach to care that guides healthcare professionals, patients and families through the journey of care towards the end of a person’s life. It represents a flexible framework designed to ensure person centred care that respects individual wishes, cultural preferences and clinical needs.1
Alina Homecare is an award winning Home Care provider operating in the South of England. If you have extra care needs and want to receive support in the comfort and familiarity of the place you call home, we can help. Find your local Team today.
What is an end of life pathway?
The terms “end of life pathway”, “palliative pathway” and “end of care pathway” all refer to the comprehensive care framework provided to individuals who are likely to pass away within the next twelve months, though this timeframe varies from person to person.2 Unlike previous end of care pathways, the modern palliative pathway emphasises individualised care planning, open communication and collaborative decision making between patients, families and healthcare teams.3
The National Institute for Health and Care Excellence (NICE) has developed updated guidance that acknowledges each person’s preferences, creating holistic care plans that address specific needs rather than following a one size fits all approach.4 This person centred method forms the basis of the End of Life Care pathway that’s currently in place.
Current NHS England guidance
The NHS England Palliative and End of Life Care National Delivery Plan (2022-2025) has created rules that require Integrated Care Boards (ICBs) to commission services that meet specific and clearly defined standards.5 These include:
Early identification of those approaching end of life
Personalised end of care pathway plan, reflecting patient and family priorities and preferences
Co-ordinated care across health, social care and voluntary sectors
To learn more about the most up to date guidance, visit the NHS website.
Understanding the six stages of the end of life pathway
Modern end of life pathways typically follow six distinct stages, each designed to ensure seamless, compassionate care:
1. Initial assessment & recognition
The first stage involves recognising that someone is approaching the end of their life. As mentioned previously, this isn’t always straightforward, as people can live with terminal conditions for extended periods. Healthcare professionals use various indicators, including:
Advanced incurable illnesses such as cancer, dementia or motor neurone disease
General frailty with co-existing conditions suggesting life expectancy of less than 12 months
Risk of dying from sudden deterioration in existing conditions
Life threatening acute conditions from catastrophic events
Early identification is crucial for enabling timely discussions about preferences, wishes and care planning.
Once someone is identified as approaching the end of their life, advance care planning becomes essential. This process involves detailed discussions about:
Preferred place of care & death: Whether it’s at home, in a hospice, hospital or care facility
Treatment preferences: Which interventions are wanted or unwanted
Resuscitation decisions: Clear documentation of CPR preferences
Spiritual & cultural needs: Religious or cultural requirements for care
Family involvement: Who should be present and involved in decision making
For some areas of the UK, the NHS England Universal Care Plan (UCP) provides a digital framework for documenting these preferences, ensuring they’re accessible to all healthcare professionals involved in someone’s end of life pathway.
3. Coordination of care
Effective coordination ensures all healthcare professionals, social care providers and family members work together seamlessly. This stage involves:
Establishing clear communication channels between all parties
Regular multidisciplinary team meetings
Sharing palliative pathway plans across different services
Ensuring 24/7 access to support and advice for the person concerned and their loved ones
4. Active care delivery
This stage focuses on implementing the End of Life Care pathway plan, with emphasis on:
Symptom management: Effective pain relief and comfort measures
Emotional support: Counselling and psychological care for patients and families
Practical assistance: Help with daily activities, medication management and household tasks
Spiritual care: Support aligned with individual beliefs and values
5. Review & adaptation
Regular review is important as it ensures that care remains appropriate and responsive to the changing needs of the individual:
Ongoing assessment of physical, emotional and spiritual wellbeing
Adjustment of care plans based on condition progression
Regular communication with patients and loved ones about preferences
Coordination of additional services as required
This stage recognises that End of Life Care is dynamic and requires flexibility and responsiveness from the healthcare professionals delivering care.
6. Bereavement support
The pathway extends beyond death to include comprehensive bereavement support to those around the person lost:
Immediate support for families and loved ones following the death
Practical assistance with registrations, funeral arrangements and legal matters
Ongoing emotional support through counselling services
Connection to community support groups and resources
Challenges in UK End of Life Care
Despite recent improvements, the UK End of Life Care system faces several challenges:
Emergency hospital admissions
Recent statistics show concerning patterns of hospital usage. In 2023, 6.2% of deaths involved three or more emergency admissions in the final 90 days of life.6
This figure suggests there are gaps in community based support that could prevent crisis driven hospital admissions, as frequent use of emergency services often indicates poor planning and lack of local resources.
Workforce shortages
Current workforce levels across health and social care settings are unable to meet existing demand, not including projected future needs. This shortage is made worse by:
Rising operational costs and inflation
Increased complexity of care needs
An ageing population requiring more end of life services
Staff burnout and retention issues
Access & equality issues
Unfortunately, there are many inequalities that affect access to quality End of Life Care:
Ethnic minorities face barriers to culturally sensitive care
Socioeconomic factors influence access to specialist services
Geographic variations create disparities in service availability
Housing conditions can limit the feasibility of care in the home
System complexity – Integrated Care Boards
The introduction of Integrated Care Boards (ICBs) has changed how healthcare services are organised when it comes to an end of life pathway. While these changes have brought many benefits, there are now many different systems and professionals involved, which have been known to create confusion for all who access the services. Knowing this, however, can provide more confidence to ask for clarification when needed.
Innovative models & best practices
Several innovative approaches have recently been developed and are showing promise in improving the End of Life Care pathway:
Responsive Emergency Assessment & Community Team (REACT)
This model, developed through partnership with Marie Curie and Bradford Teaching Hospitals, identifies Palliative Care patients in emergency departments and transitions them to community based care.7 It provides intensive short term support (up to 72 hours) through a virtual ward model, where the same systems and staffing in a hospital are used, but not in a physical hospital.
24/7 single point of access
The Cambridgeshire & Peterborough Palliative Care Hub integrates with NHS 111, ensuring end of life patients calling for help are immediately connected to specialist Palliative Care nurses who can rapidly coordinate appropriate care.8
Integrated digital systems
For Londoners, the Universal Care Plan (UCP) is available which allows doctors, nurses, care homes and Palliative Care teams to view and update patient care plans in real time.9 This ensures continuity of care and reduces any unnecessary hospital visits. It’s also an empowering way to let patients and families actively participate in your or your loved one’s end of life pathway planning.
Choosing your or your loved one’s care setting
One of the most important decisions in the end of life pathway involves choosing where to receive care. Each option offers different benefits:
Home Care remains the preferred choice for many people, with 42% of people with a terminal illness choosing home as their preferred place of death.10 Some reasons for this include:
Being in familiar and safe surroundings with personal belongings
More flexibility in daily routines and visitor arrangements
One to one attention from dedicated Carers
A lower risk of hospital acquired infections and no restricted visiting hours
Greater family involvement in care
Care at Home can involve Visiting Carers, overnight support or Live-in Care depending on individual needs and preferences. Read our guide on End of Life Care at Home to learn more.
Hospices provide a specialist end of life pathway in purpose built facilities designed for comfort and dignity. They offer:
Specialist pain and symptom management
Specialist teams including doctors, nurses and social workers
Family support services including bereavement counselling
Peaceful environments designed for End of Life Care
While not the preferred choice for most people, hospitals provide essential care for those with complex medical needs requiring:
Advanced medical interventions
Constant monitoring and specialist equipment
Emergency care for sudden deterioration
Access to specialist consultants and diagnostic services
For those already residing in care facilities, End of Life Care can often be provided in these familiar settings as there are:
Trained staff who know the individual well
Established relationships with visiting healthcare professionals
Supportive surroundings for other residents and staff during times of bereavement
Financial support & funding options
Knowing what potential funding options are available can reduce stress during an already difficult time. Here are just a few options to consider:
NHS Continuing Healthcare
This fully funded option covers individuals whose primary need is healthcare rather than social care. For those on the end of life pathway, urgent assessments are available, providing rapid access to funding.11 It covers:
Nursing care at home or in residential settings
Medical equipment and supplies
Specialist treatments and interventions
Personal health budgets
Personal health budgets are another form of financial support available via the NHS, offered to support a person’s health and wellbeing needs.12 If eligible, you or your loved one will be assigned a professional from your local NHS team who will help you plan how the money will be best spent based on a person’s care needs. This means there’s more flexibility in how the care is provided, allowing for more personalised arrangements.
Several benefits can be fast tracked for those approaching end of life to ensure they’re as comfortable as possible in their final moments. These include:
