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.

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-making and best-interest processes for individuals who may lack capacity.
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 Oliver McGowan code of practice on statutory learning disability and autism training, which require appropriate training for all staff who may support autistic people or people with a learning disability.
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 while receiving care from {{org_field_name}}:

Staff will respond calmly and respectfully, recognising this as a significant event for the person’s family and those who cared for them.
Staff will follow local guidance on what to do at the time of death in the community, including who to contact (for example, emergency services, GP, community nursing or hospice teams) and any agreed anticipatory plans.
Care of the deceased person will be carried out in a way that maintains privacy and dignity at all times, including appropriate positioning, covering the body and respecting personal and religious items.
Cultural, religious and spiritual preferences around death, rituals and viewing of the body will be identified in advance wherever possible and followed as far as is reasonably practicable.
Medication, clinical equipment and documentation will be managed safely after death in line with organisational policies, including prompt removal or secure storage of items no longer required.
Staff will offer immediate emotional support and clear information to family members and those important to the person, and signpost to bereavement and support services as needed.

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 in line with the statutory duty of candour (Regulation 20).

Any accident, incident, error or near-miss occurring in the context of end-of-life care is reported promptly in line with the Incident Reporting Policy.
Where an incident has caused, or may have contributed to, moderate or severe harm or death, we will:
- Inform the person (where possible) and/or their representative as soon as reasonably practicable.
- Offer a sincere apology and clear explanation of what is known about what happened.
- Provide written follow-up, maintain ongoing communication and support those affected.
- Conduct a proportionate investigation, identify learning and implement actions to reduce the risk of recurrence.
Where required, notifications will be made to CQC and other bodies in line with the CQC (Registration) Regulations 2009 (for example, notification of the death of a person while the regulated activity was being provided, or deaths that may be the result of abuse or neglect).
Lessons learned from incidents, complaints and feedback about end-of-life care are shared with staff and used to inform quality improvement.

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 is reviewed annually or sooner if:

There are changes in legislation or CQC guidance.
Service user feedback suggests improvements to care delivery.
New research or best practices recommend updates.

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}}
Copyright © {{current_year}} – {{org_field_name}}. All rights reserved.

DC38-End of Life and Palliative Care Policy