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When someone is approaching the end of their life, the quality of their care depends on how well you've planned for it.
An end-of-life care plan isn't a gesture. It's a practical document that tells care professionals, family members, and healthcare teams exactly what the person wants, what they don't want, and what to do when things change quickly.
This guide explains what an effective end-of-life care plan includes, why each element matters, and how to create one that actually works in practice - particularly for domiciliary care providers operating in the UK.
What is an end-of-life care plan?
An end-of-life care plan is a written document that sets out an individual's medical, personal, and emotional preferences as they approach the final stage of their life.
It exists to prevent uncertainty. Without one, care teams are left making assumptions, families are left second-guessing, and the person receiving care may not get what they actually wanted.
In domiciliary care, where coordination happens across multiple settings and involves GPs, district nurses, family members, and care professionals, a well-documented plan becomes the single source of truth.
An end-of-life care plan serves three purposes:
- Clarity for care teams – removes guesswork about medical interventions, symptom management, and daily preferences
- Continuity across handovers – ensures consistency when different carers are involved
- Respect for the individual – honours their choices when they may no longer be able to voice them
It's not the same as an advance directive (though that may be part of it). It's broader, covering everything from pain management protocols to whether someone wants their dog in the room.
Related: What Is The Purpose of A Care Plan?
End-of-life care vs palliative care: what's the difference?
These terms are often used interchangeably, but they're not quite the same thing.
Palliative care is a broad approach focused on improving quality of life for people with serious, long-term illnesses. It addresses symptom management, emotional support, and practical needs — and it can begin at any stage of illness, even alongside curative treatment.
End-of-life care is a specific type of palliative care provided during the final months, weeks, or days of life, when curative treatment is no longer appropriate or desired. The primary goal shifts entirely to comfort, dignity, and peace.
In practice:
- Palliative care can start at diagnosis and run for years
- End-of-life care is time-limited and focused on the dying process itself
Both involve multidisciplinary coordination, symptom control, and respect for the individual's wishes. The distinction matters mainly for clinical teams and care planning - for families, the experience often feels like a continuum.
The three core strategies in end-of-life care planning
Effective end-of-life care planning uses three interconnected strategies:
1. Advance care planning
This means discussing and documenting the person's values, treatment preferences, and goals of care before a crisis happens.
Advance care planning ensures future healthcare decisions respect the person's wishes, even if they lose the ability to communicate them. It's proactive, not reactive.
2. Palliative symptom management
Prioritising comfort by addressing physical symptoms - pain, breathlessness, nausea, fatigue - is central to quality end-of-life care.
This includes medication protocols, complementary therapies, regular symptom assessments, and escalation pathways when symptoms aren't controlled.
3. Comprehensive psychosocial and spiritual support
End-of-life care isn't only medical. It includes emotional support, counselling, spiritual care, and practical help for both the individual and their loved ones. This strategy acknowledges that dignity, meaning, and connection matter as much as clinical comfort.
Together, these three strategies create a safety net that honours each person's unique preferences while maintaining clinical rigour.
The four goals of end-of-life care
Every end-of-life care plan should work towards four core goals:
Maintaining comfort and managing symptoms – Alleviating pain, breathlessness, anxiety, and other distressing symptoms so the person remains as comfortable as possible.
Upholding dignity and respect – Ensuring care is delivered in a way that honours the individual's wishes, values, and beliefs, helping them retain control and a sense of self.
Providing emotional and psychological support – Offering compassion and reassurance to both the individual and their loved ones as they navigate difficult emotions and uncertainty.
Facilitating communication and coordinated care – Encouraging open dialogue among healthcare professionals, carers, the individual, and their family so everyone is informed and involved in decision-making.
These goals should be explicit in the care plan and regularly reviewed as the person's condition changes.
The 7 essential elements of an end-of-life care plan
A comprehensive end-of-life care plan should include:
1. Personal and medical information
This covers the basics: name, date of birth, NHS number, current diagnoses, medications, allergies, and relevant medical history.
Why it matters: Care professionals and emergency responders need this information immediately. If it's buried in a filing cabinet or spread across multiple systems, it's not accessible when it's needed.
2. Advance directives and legal documents
These are legal statements about what medical interventions the person does or doesn't want if they lose capacity to decide.
What advance care planning covers:
Advance care planning is a structured process that encourages people to think ahead about their healthcare wishes - ideally starting well before a crisis. It involves discussing medical goals, documenting preferences, and sharing these decisions with loved ones and medical teams.
Examples include:
- Do Not Attempt Resuscitation (DNAR) orders
- Living wills specifying refusal of life-prolonging treatment
- Lasting Power of Attorney for health and welfare decisions
Legal and ethical considerations:
For individuals who have capacity, informed consent must be sought before any medical procedure. Every person has the right to autonomy - meaning they can accept or refuse specific treatments or medications. These preferences, including any refusals, must be clearly documented to ensure their wishes are respected if they can no longer communicate.
Why it matters:
Without legally documented advance directives, default clinical protocols apply - which may not reflect what the person wanted.
3. Symptom management protocols
This section details how to manage common end-of-life symptoms: pain, nausea, breathlessness, agitation, constipation.
It should include:
- Specific medications, dosages, and administration routes
- PRN (as-needed) protocols with clear triggers for use
- Non-pharmaceutical interventions (positioning, environment adjustments)
- Escalation pathways if symptoms aren't controlled
- Documentation of current symptoms and anticipated needs
Why it matters:
Effective symptom control is what makes the difference between a comfortable death and a distressing one. Vague instructions like "manage pain as needed" aren't enough.
4. Preferred place of care and death
Where does the person want to be? At home? In a hospice? Do they want to avoid hospital admission unless absolutely necessary?
This should be explicitly documented, along with any practical arrangements needed to make it happen (equipment, additional care support, hospice referrals).
Why it matters:
Most people say they want to die at home, but without this explicitly documented and planned for, hospital admissions often happen by default during a crisis.
5. Psychosocial and spiritual support
This includes:
- Emotional and psychological support preferences
- Access to counselling or therapy
- Spiritual or religious practices and rituals
- Cultural preferences and beliefs
- Support for family members and carers
Why it matters:
End-of-life care isn't only clinical. For many people, spiritual needs or specific rituals are as important as pain relief.
6. Personal preferences and daily routines
The details that make care feel person-centred:
- Dietary preferences or restrictions
- Music, lighting, temperature preferences
- Whether they want visitors, and who
- Routines around washing, dressing, mealtimes
- Pets or personal belongings they want nearby
- Specific rituals or comforts they find meaningful
Why it matters:
These preferences are what preserve dignity and individuality. They're also the details most likely to be overlooked if they're not written down.
7. Carer and family involvement, emergency contacts, and communication arrangements
Who's involved:
- Family members or next of kin
- Carers or advocates
- Decision-makers (including those with Lasting Power of Attorney)
Who to contact and when:
- GP and out-of-hours services
- District nurses or specialist palliative care teams
- Hospital staff (if relevant)
- Preferred funeral director (if arranged in advance)
Communication arrangements:
Document how information will be shared, who needs to be kept informed, and how decisions will be communicated across the care team. This includes referrals to hospice care, spiritual services, or additional support.
Why it matters:
In an emergency, time matters. If contact details are scattered or unclear, critical decisions get delayed. Clear communication arrangements prevent information from being lost across handovers.
How to conduct an end-of-life care assessment
Before creating the care plan, you need to conduct a thorough assessment. This is more than a medical checklist - it's a holistic picture of the person's needs, wishes, and circumstances.
A comprehensive end-of-life assessment should include:
- Review of medical history and current condition – Confirm diagnosis, ongoing treatments, medications, and any recent changes in symptoms or functional ability.
- Discussion about preferences and values – Engage in open, sensitive conversations to understand the person's priorities for care, including preferred place of care, cultural or religious considerations, and what matters most to them.
- Symptom evaluation – Assess physical symptoms such as pain, appetite changes, breathlessness, fatigue, or mobility issues. Use standardised pain scales or symptom checklists where appropriate.
- Psychological, social, and spiritual needs assessment – Evaluate mental health, emotional wellbeing, social connections, and spiritual beliefs. Identify support needs for both the individual and their family.
- Risk assessment and emergency planning – Identify risks such as falls, infections, deterioration events, or potential crises. Document clear instructions for responding to emergencies.
Practical tip: Use standardised templates or checklists to ensure nothing is overlooked. Personalise the plan as much as possible to reflect the individual's unique needs and wishes.
This assessment should be reviewed regularly p-after significant health changes, hospital admissions, or at the request of the person or their family.
Real examples: what good end-of-life care plans look like
Example 1: Mr. Khan
Situation: 85-year-old man with advanced heart failure. Clear about wanting to remain at home.
What his care plan included:
- Advance directive: DNAR order in place. Explicit statement refusing hospital admission unless for symptom control that can't be managed at home.
- Symptom management: Detailed protocol for managing chest pain and breathlessness, including specific medications (e.g., GTN spray, oral morphine 5mg PRN), oxygen therapy parameters, and when to contact the palliative care team.
- Personal preferences: Classical music playing during the day. His dog, Charlie, to remain with him. Family visits welcome but limited to two people at a time to avoid overstimulation.
- Spiritual care: Weekly visits from a local vicar. Qur'an kept on his bedside table.
- Communication plan: Daily phone call to his daughter. Weekly updates to GP and district nurse.
Why it worked:
When Mr. Khan's breathlessness worsened suddenly, the care team knew exactly how to respond without needing to make emergency decisions or second-guess his wishes. His family understood the plan and felt reassured that his preferences were being followed.
Example 2: Ms. Johnson
Situation: 78-year-old woman with terminal cancer. Strong preference for minimal medical intervention.
What her care plan included:
- Advance directive: Living will refusing chemotherapy, artificial nutrition, and hospital admission. Clear instruction that comfort is the priority.
- Symptom management: Pain control through oral morphine 10mg every 4 hours, with 5mg PRN for breakthrough pain (maximum 4 doses per 24 hours). Complementary therapies (massage twice weekly, lavender aromatherapy) incorporated into daily care. Specific instructions about when to contact the palliative care nurse.
- Personal preferences: Vegetarian diet. Fresh flowers in her room (specific request for no lilies due to the scent). Daily phone call with her daughter at 10am.
- Psychosocial support: Weekly visits from a cancer support group volunteer. Access to a 24/7 helpline for her family.
- Emergency contacts: Daughter listed as primary contact, with backup contact for her son who lives abroad.
Why it worked:
Ms. Johnson's care team could focus on what she did want (comfort, connection, control) rather than defaulting to interventions she'd explicitly refused. Her family had clarity and didn't have to make difficult decisions on her behalf.
How to create a person-centred end-of-life care plan: step-by-step
Step 1: Prepare for the initial consultation
Before the meeting:
- Gather existing patient records, recent test results, current medications, and treatment notes
- Review any previous care documentation or assessments
- Identify who needs to be involved (family members, Lasting Power of Attorney holders, relevant healthcare professionals)
- Prepare a quiet, private space for the conversation
Why this matters:
Having thorough background information ensures you can address specific concerns and provide contextually relevant recommendations.
Step 2: Conduct the initial consultation
Engage in open, honest discussions with the individual and their family. Understand their values, preferences, medical history, and what matters most to them.
Key questions to explore:
- What are your main concerns right now?
- What does a good day look like for you?
- What are your priorities for the time you have left?
- Are there specific treatments you do or don't want?
- Where would you prefer to receive care?
- Who do you want involved in decisions about your care?
This isn't a box-ticking exercise. It's a conversation that may need to happen over multiple sessions.
Step 3: Collaborate with healthcare professionals
Work with doctors, nurses, palliative care specialists, and other relevant professionals to develop a comprehensive plan. This collaborative approach ensures all aspects of care are covered — medical, emotional, practical, and spiritual.
Conduct a holistic assessment at this stage (see section above) using standardised templates to ensure no detail is overlooked.
Step 4: Document preferences clearly and completely
Clearly document the individual's wishes regarding:
- Medical treatments and interventions
- Symptom management strategies
- Personal preferences and daily routines
- Preferred place of care and death
- Who is involved in decision-making
Use advance directives to formalise decisions legally. Specify not only treatments they want to avoid, but also what they do want.
Be specific: "Administer 10mg oral morphine every 4 hours" is better than "manage pain."
Store the plan somewhere accessible. Use digital care planning tools to ensure the plan is available to everyone who needs it, updated in real-time, and accessible during out-of-hours emergencies.
Step 5: Communicate with all parties involved
After documenting the plan, ensure everyone involved is informed:
For family members:
Provide clear summaries or formal copies of the care plan. Explain the decisions made and the rationale behind them. Transparency strengthens trust and ensures families feel confident in the care approach.
The Birdie Family App allows you to keep families informed with real-time updates about care delivery, ensuring they stay connected throughout the care journey.
For hospital staff and healthcare teams:
When the person may need hospital care or when multiple teams are involved, ensure the care plan is shared promptly:
- Document updates in medical records immediately – Use secure electronic health record systems (like those widely used in the NHS) to ensure hospital staff can access the latest version
- Designate clear action items – Outline specific actions required (medication changes, new symptom protocols, referrals) and assign responsibilities where possible
- Use multidisciplinary team meetings – Regular handovers or case conferences are ideal for discussing the care plan's key elements
- Inform via secure channels – Ensure information is both accessible and protected
For care teams:
Ensure all carers and healthcare professionals understand the care plan. Regular training and updates help maintain consistency in care delivery. Don't let key information get lost across shift changes.
Step 6: Implement the plan
Put the plan into action. Ensure carers know:
- What tasks need to be done and when
- How to respond to specific situations
- When to escalate concerns
- Who to contact in an emergency
Assign clear responsibilities so nothing falls through the cracks.
Step 7: Review and update regularly
Schedule regular reviews to ensure the care plan continues to meet the individual's needs. Update it as necessary to reflect changes in condition or preferences.
Review triggers:
- After significant health changes
- Following hospital admissions or GP consultations
- When new symptoms emerge
- At the request of the individual or their family
- At least every 3 months (or more frequently as needed)
Set reminders for these reviews and encourage open communication between the individual, their family, and the care team. According to Marie Curie, "effective coordination of care services can significantly improve the quality of life for individuals receiving end-of-life care at home."
Free end-of-life care plan templates for clinicians
If you're looking for practical resources to guide your documentation, several reputable UK organisations offer free downloadable templates:
General end-of-life care plan templates:
- NHS – Comprehensive templates that help document medical status, care goals, and preferred interventions
- Marie Curie – Adaptable forms designed for use in domiciliary and hospice settings
Advance care planning documentation:
- NHS Advance Decision to Refuse Treatment Template – For documenting specific treatment refusals
- Compassion in Dying – Resources for advance statements and advance decisions
Symptom management tools:
- Palliative Care Guidelines – Evidence-based symptom control protocols
- Gold Standards Framework – Comprehensive planning and coordination tools
These templates serve as starting points. Always personalise them to reflect the individual's unique circumstances and wishes.
Common challenges in documenting end-of-life care plans (and how to address them)
Even with the best intentions, clinicians and care providers face practical obstacles when creating and maintaining end-of-life care plans:
1. Time pressures and workload
Juggling high caseloads means limited time during consultations to complete detailed documentation. This can lead to rushed notes or documentation being delayed until the end of the day when details are harder to recall.
Solution: Use structured templates to streamline documentation. Block dedicated time for care planning conversations rather than trying to fit them into routine visits.
2. Administrative burden
Keeping plans accurate and current across multiple systems adds significant stress to already busy workdays.
Solution: Use digital care management systems that allow real-time updates accessible to all team members. This reduces duplication and ensures everyone works from the same version.
3. Balancing compassionate care with compliance requirements
Navigating the tension between providing person-centred care and meeting regulatory record-keeping requirements adds cognitive load, particularly around sensitive topics like end-of-life decisions.
Solution: Frame documentation as an extension of good care, not a bureaucratic burden. Clear records protect the person's wishes and support the care team.
4. Maintaining continuity across the care team
When documentation practices vary or are inconsistent, important preferences or medical updates get missed.
Solution: Establish standardised processes for documentation and handovers. Ensure all team members understand where to find information and how to update it.
Why this matters for domiciliary care providers
End-of-life care at home is complex. You're coordinating across multiple professionals, managing family emotions, and making decisions in real-time — often without immediate clinical backup.
A well-constructed care plan gives you:
- Confidence – You know you're doing what the person wanted
- Protection – Clear documentation supports you if decisions are questioned
- Efficiency – Less time spent clarifying details, more time delivering care
- Better outcomes – People are more likely to die where they want to, with their symptoms controlled
It's not about making death less sad. It's about making it less chaotic.
Related reading: Person-Centred Care Planning | How to Write Daily Care Notes | Principles of Person-Centred Care
Final thoughts
An end-of-life care plan is one of the most important documents you'll create for someone receiving domiciliary care. It's also one of the most overlooked.
Done well, it removes uncertainty, preserves dignity, and ensures that when someone dies, it's in the way they chose — not in the way that happened by default.
If you're a care provider, this is work worth doing properly. And if you're supporting someone approaching the end of their life, having this conversation now means you won't have to guess later.
See how care providers deliver outstanding person-centred care: Read our case studies
Want to see how Birdie supports person-centred care planning in practice? Book a demo — no obligation, no sales pitch, just a clear look at how the platform works.
Published date:
July 24, 2024
Author:
Frances Knight
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