Around 20% of people in England die in care homes, and many more spend their final months receiving care in residential settings. Good end of life care documentation isn't bureaucracy—it's a tool for ensuring people die with dignity, in accordance with their wishes, surrounded by comfort and compassion.
When to Start End of Life Planning
End of life planning should begin well before someone is actively dying. Ideally, these conversations happen:
- At admission (as part of comprehensive care planning)
- After any significant health deterioration
- Following hospital discharge
- At the resident's or family's request
- During annual care plan reviews
Having Difficult Conversations
Many people welcome the opportunity to discuss their wishes but are waiting for someone to raise the topic. Approach sensitively but don't avoid these important conversations.
The Advance Care Plan
An Advance Care Plan (ACP) documents a person's wishes, preferences, and priorities for their future care, including end of life. It should include:
Care Preferences
- Where they would prefer to die (care home, hospital, hospice)
- Who they want with them at the end
- Religious or spiritual needs
- Cultural practices to be observed
- Music, readings, or rituals that are important
Treatment Decisions
- Views on hospital admission
- Preferences regarding specific treatments
- Comfort measures that are important to them
- What they consider unacceptable
Practical Matters
- Funeral wishes (if they wish to share)
- Important possessions and what should happen to them
- People to be contacted
- Solicitor details if relevant
DNACPR Documentation
A Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision is a clinical decision, but one that should involve the resident and family in discussions. Document carefully:
Essential Documentation
- The clinical rationale: Why CPR would not be successful or in the person's best interests
- Who made the decision: The responsible clinician (usually GP)
- Discussions held: With whom, when, and the outcome
- Capacity assessment: Could the person participate in the decision?
- Review date: When the decision should be reconsidered
Important
A DNACPR form only relates to CPR. It does not mean "do not treat". All other appropriate care and treatment should continue. Make sure this is clearly understood by staff and documented in the care plan.
ReSPECT Forms
Many areas now use ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) which goes beyond DNACPR to capture broader emergency treatment preferences. When documenting ReSPECT:
- Record the date the form was completed and by whom
- Note the level of intervention the person wants (scale 1-5)
- Document specific preferences and limitations
- Record who was involved in the discussion
- Ensure the form is accessible in emergencies
- Note review dates and any changes
Recognising End of Life
When a resident enters the final days or weeks of life, document the recognition of dying and the shift in care focus:
Clinical Indicators
- •Profound weakness and fatigue
- •Reduced oral intake
- •Drowsiness and reduced consciousness
- •Changes in breathing patterns
- •Skin colour changes
Communications
- •GP notified and visited
- •Family informed and wishes discussed
- •Out-of-hours service alerted
- •Staff handover includes EOL status
- •Chaplain/spiritual support contacted
Comfort Measures
- •Anticipatory medications prescribed
- •Symptom management plan in place
- •Mouth care protocol
- •Positioning for comfort
- •Environment adapted
Family Support
- •Visiting arrangements clarified
- •Facilities for overnight stays
- •Refreshments available
- •Support resources offered
- •What to expect explained
Daily Documentation in Final Days
During active dying, documentation should be frequent but focused on comfort and dignity:
What to Record
- Comfort level: Is the person peaceful? Any signs of distress?
- Symptom management: Pain, breathlessness, nausea, agitation
- Medications given: Including PRN anticipatory medications
- Mouth care: Frequency and condition
- Repositioning: For comfort, not pressure care schedules
- Family presence: Who visited, for how long
- Spiritual care: Any religious needs met
Quality Indicator
Good end of life documentation focuses on comfort and dignity, not routine observations. If someone is dying peacefully, don't disturb them for unnecessary vital signs or food/fluid intake recording.
After Death Documentation
When a resident dies, document carefully and sensitively:
Immediate Documentation
- Time death was noted (not necessarily time of death)
- Who was present
- How death appeared (peaceful, expected)
- Verification of death (by whom, when)
- GP notification
- Family notification
Care After Death
- Personal care provided with dignity
- Religious or cultural practices observed
- Valuables and property secured and documented
- Funeral director arrangements
- Room prepared for family viewing if requested
Supporting Documentation
Other documents that should be in place or accessible:
Power of Attorney
Health and welfare LPA if the person lacks capacity. Know who has authority.
Advance Decision (Living Will)
Legally binding document refusing specific treatments. Must be followed.
Statement of Wishes
Non-binding preferences that should be considered in best interests decisions.
Capacity Assessments
Documentation of capacity for specific decisions about end of life care.
Best Interests Decisions
Records of decisions made on behalf of someone lacking capacity.
Family Communication Records
Throughout end of life care, maintain detailed records of family communication:
- Who was spoken to, when, and by whom
- What information was shared
- Questions asked and answers given
- Concerns raised and how they were addressed
- Decisions made and who was involved
- Disagreements and how they were resolved
CQC Expectations
CQC specifically assesses end of life care under the "Responsive" domain. They look for evidence that:
- Advance care planning conversations happen routinely
- People's wishes are documented and followed
- Staff are trained in end of life care
- Symptom management is effective and timely
- Families are supported before and after death
- Deaths are reviewed for learning opportunities
- Partnership working with GPs, palliative care teams, hospices
Learning from Deaths
After each death, conduct a reflective review:
- Were the person's wishes known and followed?
- Was symptom control adequate?
- Did family feel supported?
- Were there any delays in care or medication?
- What went well that should be replicated?
- What could have been done differently?
Conclusion
End of life documentation is about far more than compliance. It's a record of how we honoured someone in their final chapter—their wishes, their dignity, their comfort, and the support provided to those who loved them.
When done well, this documentation becomes a testament to compassionate care. It helps staff provide consistent, personalised support during the most difficult time for families, and it demonstrates to regulators that your care home understands the privilege and responsibility of caring for people at the end of their lives.
Compassionate Care, Clear Documentation
Revitaco helps care homes capture advance care plans, track symptom management, and ensure every person's final wishes are honoured.
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