Registration Number: {{org_field_registration_no}}

End of Life and Palliative Care Policy

1. Purpose

The purpose of this policy is to outline {{org_field_name}}’s commitment to delivering compassionate, dignified, and person-centred end-of-life and palliative care. This policy ensures that all service users with life-limiting illnesses or nearing the end of life receive high-quality, holistic support that prioritises comfort, dignity, emotional well-being, and symptom management.

We align our approach with the Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (Fundamental Standards), the Care Quality Commission’s assessment framework and quality statements, relevant National Institute for Health and Care Excellence (NICE) guidelines (including NG31 Care of dying adults in the last days of life and NG142 End of life care for adults: service delivery), and national frameworks such as Ambitions for Palliative and End of Life Care: A national framework for local action 2021–2026, to ensure compliance and excellence in service delivery.

{{org_field_name}} is registered with the Care Quality Commission to carry out the regulated activity of {{org_field_regulated_activity}} for {{org_field_service_users_bands}} in their own homes.

2. Scope

This policy applies to:

All employees, including care workers, palliative care specialists, and management.
Service users receiving end-of-life or palliative care, ensuring their needs are met with dignity and respect.
Families and caregivers, supporting them throughout the process.
Multi-disciplinary teams (MDTs), including GPs, hospice teams, and district nurses.
Regulatory bodies, ensuring compliance with statutory and ethical standards.

It covers:

Definition and principles of end-of-life and palliative care.
Identifying individuals requiring end-of-life care.
Developing personalised care plans.
Pain and symptom management.
Emotional, psychological, and spiritual support.
Communication with families and multi-disciplinary teams.
Training and staff responsibilities.
Continuous monitoring and quality improvement.

3. Legal and Regulatory Framework

This policy aligns with the following legal and regulatory requirements:

Health and Social Care Act 2008 and Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (as amended) – including the Fundamental Standards such as person-centred care (Regulation 9), dignity and respect (Regulation 10), need for consent (Regulation 11), safe care and treatment (Regulation 12), safeguarding from abuse and improper treatment (Regulation 13), good governance (Regulation 17), staffing (Regulation 18), fit and proper persons employed (Regulation 19) and duty of candour (Regulation 20). Care Quality Commission
Care Quality Commission (Registration) Regulations 2009, including the requirement to notify CQC of deaths and other incidents related to the regulated activity.
Care Act 2014 – ensuring person-centred care, prevention, well-being and safeguarding duties for adults with care and support needs.
Mental Capacity Act 2005 and its Code of Practice – supporting decision-specific capacity assessments and best-interest decisions. Following the Supreme Court judgment of 2 June 2026, any possible deprivation of liberty must be assessed using the person’s individual circumstances and the type, duration, effects and manner of restrictions; no single factor is determinative. In a person’s own home or another community setting, authorisation is through the court rather than the DoLS process.
Equality Act 2010 – preventing discrimination, advancing equality of opportunity and promoting inclusive care, including reasonable adjustments for disabled and neurodivergent people.
Health and Care Act 2022 and the final Oliver McGowan Code of Practice on Statutory Learning Disability and Autism Training, which require registered providers to ensure that staff receive learning-disability and autism training appropriate to their role.
NICE Guidelines on end-of-life care, including NG31 (Care of dying adults in the last days of life) and NG142 (End of life care for adults: service delivery).
Ambitions for Palliative and End of Life Care: A national framework for local action 2021–2026, which describes what high-quality palliative and end-of-life care should look like across the system.
UK General Data Protection Regulation (UK GDPR) and Data Protection Act 2018 – ensuring confidentiality, lawfulness, fairness and secure handling of personal data.

4. Definition and Principles of End-of-Life and Palliative Care

End-of-life and palliative care aim to:

Provide holistic, person-centred support tailored to the service user’s needs.
Manage pain and distressing symptoms effectively.
Promote emotional, psychological, and spiritual well-being.
Support families and caregivers in decision-making and bereavement.
Ensure continuity of care through effective collaboration with healthcare professionals.
Respect the individual’s wishes, values, and cultural preferences.

5. Identifying Individuals Requiring End-of-Life Care

{{org_field_name}} ensures early identification through:

Regular assessments and reviews in collaboration with GPs and specialists.
Monitoring disease progression and functional decline.
Recognising signs that indicate transition to end-of-life phase.
Holding advance care planning discussions with the service user and their family.

6. Developing Personalised End-of-Life Care Plans

A detailed, person-centred care plan is developed based on:

Service user preferences and advance decisions.
Pain and symptom management needs.
Preferred place of care (home, hospice, hospital, or care facility).
Psychological, emotional, and spiritual support requirements.
Support for family and caregivers, including respite care options.
Do Not Attempt Resuscitation (DNAR) and advance directives, if applicable.

Care plans are developed and reviewed in partnership with the person and those important to them and are coordinated with other providers (for example, GPs, district nurses, specialist palliative care, hospice at home services and out-of-hours services) to ensure continuity and safe handover of care, in line with NICE guidance on end of life care service delivery.

Consent, Mental Capacity and Advance Care Planning

{{org_field_name}} is committed to obtaining valid consent and supporting decision-making in line with the Mental Capacity Act 2005, its Code of Practice and Regulation 11 (need for consent) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

We presume that every adult has capacity to make their own decisions unless it is established otherwise.
Where there is concern about capacity to make a specific decision, a time- and decision-specific mental capacity assessment will be carried out by an appropriately trained person, and the outcome clearly recorded in the care records.
When a person is assessed as lacking capacity for a particular decision, any act done or decision made on their behalf will be in their best interests, following the Mental Capacity Act best-interest checklist and involving those important to them (family, friends, advocates, attorneys) as appropriate.
Staff will check for and respect any valid and applicable Advance Decisions to Refuse Treatment (ADRT), Lasting Powers of Attorney (health and welfare) and other advance care planning documents, and ensure these are filed and flagged in the care plan.
Where required, an Independent Mental Capacity Advocate (IMCA) will be involved in serious medical treatment or accommodation decisions for people who lack capacity and have no one appropriate to consult.
Discussions about future care, preferred place of care/death, DNACPR/RESPECT forms and treatment escalation will be carried out sensitively, documented clearly, and revisited regularly as part of ongoing advance care planning.

7. Pain and Symptom Management

To maintain comfort and quality of life, our care team ensures:

Regular pain assessments using validated pain scales.
Administration of appropriate analgesics and medications in consultation with medical professionals.
Use of non-pharmacological approaches (e.g., massage, relaxation techniques, repositioning).
Monitoring and managing symptoms such as breathlessness, nausea, and agitation.

Safeguarding and Protection at the End of Life

{{org_field_name}} adopts a zero-tolerance approach to abuse, neglect, discrimination and degrading treatment. People approaching the end of life remain entitled to full safeguarding protection in line with the Care Act 2014 and Regulation 13 (safeguarding from abuse and improper treatment).

Staff are trained to recognise signs of abuse, neglect, neglect by omission, organisational abuse and coercion, including in the context of rapidly changing health needs.
Any safeguarding concern is reported immediately in line with {{org_field_name}}’s Safeguarding Adults Policy and local safeguarding adults procedures.
We pay particular attention to people who may be at increased risk of poor end-of-life outcomes or inequalities in access to care (for example, people with a learning disability or autistic people, people experiencing homelessness, those from minoritised ethnic groups, LGBTQ+ people and people with severe mental illness), in line with national ambitions to tackle inequalities in palliative and end-of-life care.
Reasonable adjustments are made for disabled and neurodivergent people, including communication support, environmental adjustments and tailored information.

8. Emotional, Psychological, and Spiritual Support

We acknowledge the emotional impact of end-of-life care on both service users and their loved ones. Our approach includes:

Counselling and emotional support through trained professionals.
Providing access to chaplaincy, spiritual advisors, or cultural representatives.
Ensuring service users and families have access to grief and bereavement support.

Care at the Time of Death and After Death

When a person dies, or appears to have died, while receiving care from {{org_field_name}}, staff will respond calmly, respectfully and in accordance with the person’s care plan, any anticipatory end-of-life arrangements and the applicable local procedure for expected or unexpected deaths in the community.

Staff must:

Preserve the person’s dignity, privacy and cultural, religious and spiritual preferences.
Follow any documented anticipatory plan concerning whom to contact when death occurs.
Contact the appropriate healthcare professional, community nursing service, GP, hospice team, out-of-hours service or emergency service according to the circumstances and local arrangements.
Immediately escalate any unexpected, unexplained, suspicious or potentially unnatural death through the appropriate emergency, police and/or coroner pathway.
Follow local arrangements for verification of death and must not undertake verification unless they are appropriately trained, authorised and competent to do so.
Record accurately the circumstances, time, observations, persons contacted and actions taken.

Death Certification and Medical Examiner Process

Since 9 September 2024, the statutory death-certification system in England and Wales requires every death to be independently scrutinised.

A death will therefore proceed through either:

Independent scrutiny by a Medical Examiner where the death is not being investigated by a coroner; or
Investigation through the coroner system where the statutory criteria for coroner involvement are met.

Where the death is non-coronial, the relevant attending medical practitioner or other authorised medical practitioner will complete the applicable medical certification process and the Medical Examiner will independently scrutinise the proposed cause of death before the death can be registered.

Care staff employed by {{org_field_name}} do not determine or certify the medical cause of death.

Staff will provide relevant factual care records or information to authorised healthcare professionals, the Medical Examiner, coroner, CQC or other lawful authority where this is required and permitted.

Care of the Deceased Person

Where it is appropriate to provide care after death, this will be undertaken respectfully and in accordance with:

The person’s known wishes.
Their cultural, religious and spiritual beliefs.
Any agreed end-of-life care plan.
Local community or healthcare procedures.
Instructions from healthcare professionals, the police or coroner where applicable.

Care may include appropriate positioning and covering of the deceased person and maintaining a calm and respectful environment.

Where a death is unexpected, unexplained, suspicious or may require police or coroner involvement, staff must not unnecessarily move the body, disturb the immediate environment or remove items that may be relevant until appropriate advice or authority has been obtained.

Medicines, Equipment and Records

Following an expected death:

Medicines will be managed securely in accordance with the organisation’s medicines policy and applicable pharmacy, prescriber and local arrangements.
Staff must not dispose of medicines unless authorised to do so in accordance with the applicable procedure.
Clinical and care equipment will be secured and returned or collected by the appropriate provider when authorised.
Care records will be completed promptly and retained securely.
Relevant professionals and organisational management will be informed as required.

Where the death is subject to police or coroner involvement, medicines, equipment, records or other potentially relevant items must not be altered, removed or disposed of contrary to instructions from the relevant authority.

Supporting Family and Those Important to the Person

Staff will:

Communicate sensitively and compassionately.
Provide clear factual information within the limits of their role.
Avoid speculation about the cause of death.
Explain whom the family should expect to hear from where this information is known.
Signpost to bereavement and other support services where appropriate.

The family should be advised that formal certification and registration of the death will proceed through the current statutory death-certification process.

9. Communication with Families and Multi-Disciplinary Teams

Open, compassionate communication is critical in end-of-life care. {{org_field_name}} ensures:

Transparent discussions about prognosis, care plans, and available options.
Regular family meetings to provide updates and emotional support.
Effective collaboration with hospice teams, district nurses, and GPs.
Compliance with Mental Capacity Act 2005 when making decisions on behalf of individuals lacking capacity.

10. Training and Staff Responsibilities

To ensure high-quality palliative care, all employees receive:

Mandatory training in end-of-life and palliative care, including recognition of deterioration, symptom management, communication at the end of life and care after death.
Training on consent, the Mental Capacity Act 2005 and best-interest decision-making, including the use of advance care planning, ADRTs and powers of attorney.
Mandatory training on learning disability and autism, in line with the Health and Care Act 2022 and the Oliver McGowan code of practice, to ensure staff can meet the needs of autistic people and people with a learning disability safely and respectfully.
Training on safeguarding adults, equality, diversity and inclusion, including recognising and responding to abuse, neglect, discriminatory practice and health inequalities at the end of life.
Regular refresher training and updates when guidance, legislation or best practice changes.
Access to supervision, debriefing and emotional support to help staff cope with the emotional demands of end-of-life care and to promote reflective, learning-focused practice.

Incident Management, Duty of Candour and Notifications

{{org_field_name}} promotes an open and learning culture and will respond appropriately to accidents, incidents, errors, safeguarding concerns and deaths occurring in connection with end-of-life care.

All incidents and near misses must be reported promptly through the organisation’s incident-reporting procedure.

Duty of Candour

{{org_field_name}} will act openly and transparently with people receiving care and those lawfully acting on their behalf in accordance with Regulation 20 – Duty of Candour.

Where an incident meets the statutory definition of a notifiable safety incident applicable to {{org_field_name}}, the formal Duty of Candour procedure will be followed.

For a registered provider other than an NHS health service body, a notifiable safety incident is an unintended or unexpected incident occurring in respect of a service user during the provision of a regulated activity which, in the reasonable opinion of a healthcare professional:

Appears to have resulted in:

● The death of the service user, where the death relates directly to the incident rather than to the natural course of the person’s illness or underlying condition.

● An impairment of the person’s sensory, motor or intellectual functions lasting, or likely to last, for a continuous period of at least 28 days.

● Changes to the structure of the person’s body.

● Prolonged pain.

● Prolonged psychological harm.

● A shortening of the person’s life expectancy.

Or requires treatment by a healthcare professional in order to prevent:

● The death of the service user; or

● An injury which, if left untreated, would result in one or more of the statutory outcomes above.

Where the threshold is met, {{org_field_name}} will:

● Notify the relevant person as soon as reasonably practicable.

● Provide a factual account of what is known at that time.

● Explain any further enquiries or investigations considered appropriate.

● Provide a sincere apology.

● Provide reasonable support.

● Follow up the notification in writing.

● Provide relevant outcomes of further enquiries or investigations.

● Maintain appropriate records of the Duty of Candour process.

The general requirement to act openly and transparently continues to apply even where an incident does not meet the specific statutory notifiable safety incident threshold.

CQC Notification of Death – Regulation 16

The Registered Manager will assess every relevant death against Regulation 16 of the Care Quality Commission (Registration) Regulations 2009.

{{org_field_name}} must notify CQC without delay of the death of a service user where:

● The service user dies while services are being provided in carrying on a regulated activity; or

● The death has, or may have, resulted from carrying on a regulated activity.

The notification must include a description of the circumstances of the death.

This means that a death may require notification even where it was expected if the person died while the regulated activity was actually being provided.

A death occurring outside the provision of the regulated activity must also be considered for notification where the death has, or may have, resulted from the regulated activity or the way it was provided.

The Registered Manager must not assume that a death is non-notifiable merely because:

● The person was receiving palliative or end-of-life care.

● A DNACPR decision was in place.

● The death had been anticipated.

● The person had a terminal illness.

The actual circumstances must be assessed against Regulation 16.

Where notification is required:

● It will be submitted without delay.

● The current CQC notification form or Provider Portal route will be used.

● The circumstances of the death will be recorded accurately.

● Completion of an internal investigation must not delay the statutory notification.

● Confirmation or reference details will be retained.

Other CQC Notifications

The Registered Manager will separately consider whether Regulation 18 – Notification of other incidents applies, including where there has been:

● A serious injury meeting the statutory criteria.

● Abuse or an allegation of abuse.

● Police involvement in an incident concerning a service user.

● Another event covered by Regulation 18.

Each notification requirement will be assessed according to its own legal threshold.

Death Certification, Coroner and CQC Processes are Separate

The statutory Medical Examiner or coroner process and CQC notification requirements serve different purposes.

Compliance with one process does not remove the requirement to consider the others.

Following a death, {{org_field_name}} will therefore separately consider:

● The local verification-of-death process.

● The statutory Medical Examiner/death-certification process.

● Whether referral to the coroner or police is required.

● Whether CQC Regulation 16 requires notification.

● Whether CQC Regulation 18 applies.

● Whether safeguarding procedures are required.

● Whether Duty of Candour applies.

● Whether commissioners or other relevant organisations must be informed.

Investigation and Learning

Where appropriate, {{org_field_name}} will undertake a proportionate review or investigation to establish:

● What happened.

● Whether the person’s care plan and expressed wishes were followed.

● Whether medicines and symptom-management arrangements were appropriate.

● Whether deterioration was recognised and escalated appropriately.

● Whether communication and multi-disciplinary arrangements were effective.

● Whether safeguarding concerns existed.

● Whether any omission or delay contributed to harm.

● Whether further action is required.

Lessons identified from deaths, incidents, complaints and feedback will be used to improve care plans, training, supervision, communication and organisational systems.

11. Continuous Monitoring and Quality Improvement

{{org_field_name}} maintains high standards of care through:

Regular audits of end-of-life care plans and service user feedback.
Incident reporting and learning from complaints or concerns.
Reviewing and updating policies based on best practices and legal requirements.
Engagement with external palliative care specialists to enhance care delivery.

We use this information to evidence that our end-of-life care is safe, effective, caring, responsive and well-led, in line with the Care Quality Commission’s Single Assessment Framework and associated quality statements.

12. Policy Review and Updates

This policy will be reviewed at least annually, or sooner where necessary, to ensure that it remains accurate, effective and consistent with current legislation, CQC requirements, NICE guidance and national end-of-life and palliative-care arrangements.

An earlier review will be undertaken where:

The Health and Social Care Act 2008 or Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 are amended in a way relevant to end-of-life care.
CQC requirements relating to person-centred care, consent, safe care and treatment, safeguarding, governance, staffing or Duty of Candour materially change.
CQC statutory notification requirements relating to deaths or other incidents change.
The Mental Capacity Act 2005 or its Code of Practice is amended or replaced.
Death-certification, Medical Examiner or coroner legislation materially changes.
NICE NG31, NG142 or other nationally applicable end-of-life guidance is materially updated or replaced.
The Oliver McGowan Code of Practice or statutory learning disability and autism training requirements change.
National palliative and end-of-life care frameworks are replaced or materially revised.
A serious incident, unexpected death, safeguarding concern or Duty of Candour case identifies weaknesses in current arrangements.
Complaints, service-user or family feedback identify required improvements.
Audits identify deficiencies in end-of-life care planning, medicines, communication, documentation or staff competence.
The organisation materially changes the end-of-life or palliative-care services it provides.

The Registered Manager is responsible for ensuring that this policy remains current and is implemented effectively.

As part of the review process, {{org_field_name}} will consider:

End-of-life and palliative-care plans.
Advance care planning records.
ADRTs and relevant LPA arrangements.
DNACPR or other treatment-escalation documentation where applicable.
Pain and symptom-management arrangements.
Medicines incidents.
Expected and unexpected deaths.
CQC death notifications.
Duty of Candour cases.
Coroner or Medical Examiner feedback where relevant.
Safeguarding concerns.
Complaints and compliments.
Feedback from people receiving care, families and representatives.
Multi-disciplinary feedback.
Staff training, competency and supervision.
CQC inspection or assessment findings.
Changes in legislation, NICE guidance and national end-of-life care requirements.

Any amendments made to this policy will be:

Recorded with the date of review and, where appropriate, a summary of material changes.
Approved by the appropriate responsible person.
Communicated to relevant staff.
Reflected in care-plan templates, end-of-life documentation and associated procedures where necessary.
Incorporated into staff training, supervision or competency assessment where required.
Communicated to relevant partner professionals where operational arrangements are materially affected.

All staff involved in end-of-life or palliative care must follow the current version of this policy.

{{org_field_name}} will use learning from deaths, incidents, complaints, audits, staff feedback, service-user and family feedback and regulatory findings to continuously improve the quality, safety and compassion of end-of-life care.

Responsible Person: {{org_field_registered_manager_first_name}} {{org_field_registered_manager_last_name}}
Reviewed on: {{last_update_date}}
Next Review Date: {{next_review_date}}
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