Palliative Care Planning in the UK: Your Complete Guide
Understanding Palliative Care: More Than End-of-Life Support
Facing the reality of palliative care might not feel easy—but planning ahead can significantly ease the burden for you and those you love. Despite common misconceptions, palliative care isn't just about dying. It's about living as well as possible when facing a serious illness.
Palliative care is specialised medical care designed to provide relief from symptoms, pain, and stress associated with serious illnesses. It aims to improve quality of life for both you and your loved ones and can be provided alongside curative treatments. The goal isn't to hasten or postpone death, but to help you live well with your condition.
Palliative Care vs Hospice Care: Understanding the Difference
Many people confuse palliative and hospice care, but they serve different purposes:
Palliative Care:
Can begin at diagnosis of any serious illness
Provided alongside curative treatments
No prognosis requirement
Can continue for years
Available in hospitals, clinics, or at home
Covered by standard NHS services
Hospice Care:
Typically for final months of life (prognosis of 6 months or less)
Focus on comfort when cure isn't possible
Provides intensive support for patient and family
Usually in hospice facility or intensive home support
Specialised end-of-life expertise
You can receive palliative care while still pursuing aggressive treatment for your condition. Many people receive palliative care for years while managing chronic conditions.
Who Should Consider Palliative Care Planning?
Palliative care planning isn't just for the terminally ill. Consider planning if you have:
Serious Chronic Conditions:
Cancer (at any stage)
Heart disease or heart failure
Chronic obstructive pulmonary disease (COPD)
Kidney disease
Liver disease
Dementia or Alzheimer's
Motor neurone disease
Multiple sclerosis
Parkinson's disease
Life-Limiting Conditions:
Any diagnosis with uncertain prognosis
Conditions requiring frequent hospitalisation
Progressive illnesses affecting daily life
Multiple chronic conditions
Or Simply:
Want control over future medical care
Wish to reduce burden on family
Value quality of life decisions
Want comprehensive advance planning
When to Start Palliative Care Planning
The best time to plan is when you're well enough to think clearly about your preferences. Consider starting:
At diagnosis of any serious condition
Before major treatment decisions
When hospitalisations increase in frequency
If daily activities become challenging
When family expresses concern about coping
Before cognitive decline affects decision-making
Remember: Early palliative care has been shown to improve both quality of life and, in some cases, survival rates.
Financial Planning for Palliative Care
Understanding the financial aspects helps reduce stress during difficult times:
NHS Continuing Healthcare (CHC)
Free care provided by the NHS for those with complex medical needs:
Eligibility:
Primary health need (not means-tested)
Complex, intense, or unpredictable needs
Regular assessment required
What it covers:
Care home fees (including accommodation)
Healthcare costs
Personal care
Equipment and adaptations
How to apply:
Request assessment from GP or hospital
Multidisciplinary team evaluation
Decision within 28 days
Right to appeal if refused
NHS-Funded Nursing Care
If not eligible for full CHC:
Contribution towards nursing care costs
Currently £209.19 per week (2024/25)
Paid directly to care home
Other Financial Support
(Costs correct for 2025)
Attendance Allowance:
For over state pension age
£72.65 or £108.55 weekly (2024/25)
Not means-tested
Extra help with personal care costs
Personal Independence Payment (PIP):
For under state pension age
Daily living and/or mobility components
£72.65 to £184.30 weekly
Carer's Allowance:
£81.90 weekly for carers
Must provide 35+ hours care weekly
Income restrictions apply
Private Palliative Care Costs
Typical costs include:
Private hospice: £500-£1,000 per day
Home care: £20-£30 per hour
Live-in care: £1,000-£1,500 per week
Equipment rental: £50-£200 per month
Creating Your Palliative Care Plan
A comprehensive plan ensures your wishes are respected and reduces family stress:
Essential Documents
1. Advance Decision (Living Will) Legally binding document refusing specific treatments:
Which treatments to refuse
Circumstances for refusal
Must be signed and witnessed
Review my Living Will guide
2. Advance Statement Non-binding preferences about care:
Where you'd like to be cared for
Religious or spiritual needs
Food preferences
Music, environment preferences
Who you'd like present
Compassion In Dying have a useful Advance Statement template
3. Healthcare Lasting Power of Attorney Appoint someone to make health decisions:
Choose someone you trust completely
Discuss your values and preferences
Can work alongside advance decisions
See my Healthcare LPA guide
4. DNACPR (Do Not Attempt CPR) Specific instruction about resuscitation:
Discussed with medical team
Based on likely success/your wishes
Doesn't affect other treatments
Can be reversed anytime
Ask your healthcare provider for a copy of this form
Your Care Preferences Worksheet
Medical Treatment Preferences:
Pain management priorities
Acceptable side effects
Experimental treatment views
Life support preferences
Organ donation wishes
Quality of Life Priorities:
What makes life meaningful to you
Acceptable limitations
Independence vs comfort balance
Cognitive function importance
Environment Preferences:
Home vs hospital vs hospice
Private room preferences
Visitor policies
Pet visits
Religious/spiritual items
Communication Preferences:
Who receives medical updates
How much detail you want
Decision-making involvement
Second opinion preferences
To help you, here is a downloadable Care Preferences Worksheet.
Practical Steps to Prepare
Step 1: Start the Conversation Early
With Family:
Choose a calm, private setting
Start with your values, not medical details
Use "I" statements about your wishes
Listen to their concerns
Revisit regularly as things change
Conversation Starters:
"I've been thinking about what's important to me if I become seriously ill..."
"I want to make sure you're not burdened with difficult decisions..."
"Let me share what quality of life means to me..."
With Healthcare Providers:
Ask about likely disease progression
Discuss treatment options and outcomes
Understand comfort care possibilities
Request palliative care referral
Review medications regularly
Step 2: Build Your Care Team
You might decide you don't need all of these people - it's a comprehensive list but choose the team that is important to you. Your GP and/or consultant should be able to help you in building this team.
Medical Team:
GP as coordinator
Specialist consultant
Palliative care consultant
Clinical nurse specialist
Pharmacist
Support Team:
Social worker
Physiotherapist
Occupational therapist
Counsellor/psychologist
Spiritual care provider
Personal Team:
Primary family carer
Backup carers
Power of attorney holders
Advocate/spokesperson
Practical helpers
Step 3: Choose Your Care Setting
Home Care:
Pros: Familiar environment, family presence, pet companionship
Cons: Family burden, equipment needs, 24/7 care challenges
Requirements: Suitable space, willing carers, community support
Hospice Care:
Pros: Expert care, 24/7 support, family respite
Cons: Away from home, visiting limitations, waiting lists
Options: Day hospice, inpatient, hospice at home
Hospital Care:
Pros: Immediate medical support, specialist equipment
Cons: Clinical environment, visiting restrictions, less privacy
When needed: Complex symptoms, emergency situations
Care Home with Nursing:
Pros: 24/7 professional care, social environment
Cons: Cost, less personalised, quality varies
Considerations: Specialist units, location, visiting policies
Step 4: Plan for Symptom Management
Work with your team to address:
Pain Control:
Regular assessments
Medication options
Non-drug approaches
Side effect management
Breakthrough pain plans
Other Symptoms:
Nausea and vomiting
Breathlessness
Fatigue
Anxiety and depression
Sleep problems
Appetite changes
Step 5: Address Emotional and Spiritual Needs
Emotional Support:
Individual counselling
Family therapy
Support groups
Peer mentoring
Creative therapies
Spiritual Care:
Chaplaincy services
Religious rituals
Meditation/mindfulness
Life review
Legacy creation
Supporting Your Family
Your family needs care too. Help them by:
Preparing Children
Age-Appropriate Communication:
Use clear, simple language
Answer questions honestly
Reassure about their care
Maintain routines
Professional support available
Resources for Children:
Winston's Wish (grief support)
Books about illness/loss
School counsellor involvement
Sibling support groups
Supporting Your Primary Carer
Practical Support:
Respite care arrangements
Clear care instructions
Emergency contact lists
Financial provisions
Equipment training
Emotional Support:
Acknowledge their sacrifice
Encourage self-care
Connect with carer groups
Professional counselling
Regular check-ins
Family Meetings
Regular meetings help everyone:
Share updates together
Discuss care changes
Address concerns
Assign responsibilities
Maintain connection
Creating Your Emergency Plan
Medical Emergency Card
Include:
Diagnosis and key conditions
Current medications
Allergies
DNACPR status
Key contact numbers
Preferred hospital
Quick Access File
Prepare folder with:
Advance decisions
LPA documents
Insurance details
Medication list
Care preferences
Contact numbers
Digital Backup
Store copies in:
Cloud storage
USB drive
With trusted person
GP surgery
Hospital records
Common Questions About Palliative Care
When should palliative care begin?
Ideally at diagnosis of any serious illness. Research shows early palliative care improves quality of life and can even extend survival. You don't need to be dying to benefit from symptom management and support.
Will accepting palliative care mean giving up on treatment?
No. Palliative care works alongside curative treatments. Many people receive both chemotherapy and palliative care, for example. The goal is to help you tolerate treatment better and maintain quality of life.
How do I access palliative care through the NHS?
Ask your GP, hospital consultant, or specialist nurse for a referral. You can also self-refer to some services. Palliative care is available in hospitals, hospices, and at home through community teams.
What if my family disagrees with my choices?
Clear documentation of your wishes helps. Include family in planning discussions when possible. Consider mediation through hospital patient advocacy services. Your appointed healthcare attorney has legal authority to ensure your wishes are followed.
Can I change my mind about care preferences?
Yes, absolutely. Preferences often change as conditions progress. Review and update your advance care plan regularly. Inform your healthcare team and family of any changes. Nothing is set in stone.
What about alternative and complementary therapies?
Many palliative care services offer complementary therapies like massage, acupuncture, and aromatherapy. Discuss with your team to ensure they're safe alongside medical treatments. Some hospices have dedicated complementary therapy teams.
How do I know if I qualify for NHS Continuing Healthcare?
You need a formal assessment. Your medical team should initiate this if they think you're eligible. Focus is on health needs, not financial situation. Get help from social services if assessment is delayed.
What if I want to travel while receiving palliative care?
Discuss with your team. Many people travel successfully with planning. Consider travel insurance, medical letters, medication supplies, and destination healthcare. Some hospices offer "hospice holidays."
Resources and Support
National Organisations
Marie Curie
24/7 support line: 0800 090 2309
Nursing care at home
Hospice services
Information and support
Macmillan Cancer Support
Support line: 0808 808 00 00
Financial guidance
Practical support
Online community
Hospice UK
Find local hospice services
Information about hospice care
Bereavement support
Sue Ryder
Neurological care expertise
Online bereavement support
Care centres nationwide
Specialist Support
Motor Neurone Disease Association
Helpline: 0808 802 6262
Equipment loan
Care information
Alzheimer's Society
Helpline: 0333 150 3456
Dementia support
Admiral Nurses
British Heart Foundation
Heart Helpline: 0300 330 3311
Heart failure support
Care information
Practical Support
Carers UK
Advice line: 0808 808 7777
Benefits information
Respite guidance
Citizens Advice
Benefits calculator
Legal rights
Debt advice
Age UK
Advice line: 0800 678 1602
Benefits check
Care needs assessment
Your Palliative Care Planning Checklist
Immediate Actions:
Discuss wishes with family
Speak to GP about concerns
Research local services
Start advance care planning
Within One Month:
Create advance decision
Consider Healthcare LPA
Meet palliative care team
Review financial situation
Apply for relevant benefits
Within Three Months:
Complete all documentation
Establish care routines
Connect with support groups
Plan respite for carers
Create emergency plan
Ongoing:
Regular team reviews
Update documents as needed
Monitor carer wellbeing
Adjust care plan
Maintain quality of life focus
Final Thoughts: Living Well with Serious Illness
Palliative care planning isn't about giving up. It's about taking control. By planning ahead, you ensure your values guide your care, your family feels supported, and your medical team can provide the best possible support.
Remember, palliative care is about adding life to your days, not just days to your life. With good planning and support, many people find this phase brings unexpected moments of joy, deeper connections, and meaningful experiences.