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End of Life and Palliative Care Policy

1. Purpose

The purpose of this policy is to ensure that {{org_field_name}} provides high-quality, compassionate, and person-centred end-of-life and palliative care to individuals receiving domiciliary care. This policy establishes how we support service users and their families, ensuring dignity, comfort, and respect during their final stages of life.

We are committed to:

• Providing holistic, person-centred care tailored to individuals’ wishes, religious beliefs, and cultural preferences.
• Managing pain and symptoms effectively, ensuring comfort and quality of life.
• Supporting emotional, psychological, and spiritual well-being for both service users and their families.
• Ensuring all care is delivered with dignity and respect, following best practices in palliative care.
• Working collaboratively with healthcare professionals, including GPs, district nurses, palliative care teams, and hospices.

This policy ensures compliance with Care Inspectorate Wales (CIW) regulations and national palliative care guidelines.

2. Scope

This policy applies to:

• Service users receiving end-of-life or palliative care in their own homes.
• Family members and carers, ensuring they are supported throughout the process.
• All employees, including care staff, senior carers, managers, and administrative personnel.
• The Registered Manager and Responsible Individual, who ensure regulatory compliance.
• Healthcare professionals, including GPs, hospice teams, and palliative care specialists involved in delivering care.

3. Legal and Regulatory Framework

This policy is in line with the following legislation, regulations, and best practices:

• The Regulation and Inspection of Social Care (Wales) Act 2016, ensuring care services meet legal and ethical standards​.
• The Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017, mandating that providers deliver safe, high-quality care​.
• The Social Services and Well-being (Wales) Act 2014, promoting person-centred and holistic care planning.
• The Mental Capacity Act 2005, ensuring that individuals lacking capacity receive care based on their best interests.
• The Health and Social Care (Quality and Engagement) (Wales) Act 2020, reinforcing care providers’ responsibility to ensure safe and compassionate care.
• The Welsh Ministers’ statutory guidance for providers of care home and domiciliary support services (last updated 27 March 2024), which sets expectations for compliance with the Regulated Services Regulations and is used by CIW when inspecting and assessing outcomes.
• Regulation 13 (Duty of candour) requirements, and Social Care Wales guidance on the professional duty of candour (openness and honesty when things go wrong).
• Regulation 23–24 requirements for accessible information and meeting language/communication needs, including actively offering Welsh language services where appropriate.
• Regulation 58 medicines management requirements (ordering, recording, safe storage including controlled drugs, administration, disposal, audit and delegation arrangements).
• Regulation 64 complaints requirements, including information on independent advocacy and the Citizen Voice Body (Llais).
• The Citizen Voice Body for Health and Social Care (“Llais”) (operational from April 2023) and how people can access its support (including complaints advocacy where applicable).
• The Regulated Services (Inspection Ratings) (Wales) Regulations 2025 and CIW ratings requirements for domiciliary support services (from 1 April 2025).
• Data Protection Act 2018 and UK GDPR (confidentiality, lawful sharing, secure records).
• Equality Act 2010 and Human Rights Act 1998 (non-discrimination, dignity, respect, private/family life).
• NICE Guidelines for End-of-Life Care, setting out best practices for symptom management and care planning.
• The Gold Standards Framework (GSF) for palliative care, supporting a structured approach to end-of-life care.

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

Our approach is based on the following principles:

• Dignity and Respect – Ensuring all individuals receive care that upholds their self-worth and personal choices.
• Pain and Symptom Control – Managing distressing symptoms effectively, in coordination with healthcare professionals.
• Emotional and Psychological Support – Providing reassurance and comfort to service users and their families.
• Choice and Personal Preferences – Respecting individuals’ wishes regarding where and how they receive care.
• Collaboration and Communication – Working closely with families, GPs, nurses, and palliative care teams.

Duty of Candour (Openness and Honesty)

We act in an open and transparent way with people receiving care and support and, where appropriate, their representatives. Where something goes wrong (including an incident, error, omission, or poor communication) that has caused or could cause harm or distress, we will:

• tell the individual (and/or their representative) what is known at the time in a timely, honest and compassionate way;
• apologise where appropriate;
• explain what will be investigated and by whom, and share outcomes and learning when available;
• record the duty of candour actions taken, including the discussions held and any agreed next steps; and
• take action to reduce the risk of recurrence and share learning with staff through supervision, team briefings and training.
  All staff are expected to follow our duty of candour arrangements in line with CIW statutory guidance and Social Care Wales guidance.

5. Assessment and Care Planning

5.1 Initial Assessment

Upon identifying a service user requiring palliative or end-of-life care, our care team:

1. Conducts a comprehensive assessment in collaboration with healthcare professionals, the individual, and their family.
2. Develops a personalised care plan focused on pain relief, comfort, and emotional well-being.
3. Reviews any existing advance care plans, DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) decision/form (where in place) or Lasting Power of Attorney arrangements. Where a DNACPR decision exists, we ensure it is clearly recorded, accessible to staff attending the home, and communicated appropriately with relevant professionals in line with the All-Wales DNACPR policy.

How we manage this efficiently:

• A digital care planning system ensures updates and access for care teams.
• Regular communication with healthcare providers ensures an integrated approach to care.
• A senior care coordinator is assigned to oversee the service user’s care and liaise with family members.

5.2 Advance Care Planning (ACP)

Advance care planning ensures that service users’ preferences and values are documented and respected. ACP discussions cover:

• Preferred place of care (e.g., home, hospice, hospital).
• Medical interventions they do or do not wish to receive.
• Religious or spiritual beliefs that should be honoured.
• Funeral or bereavement planning (if the individual wishes to discuss it).

How we manage this efficiently:

• Trained care staff facilitate ACP discussions sensitively.
• ACP documents are securely stored and accessible to relevant care professionals.
• Any advance statement and/or advance decision to refuse treatment (ADRT) (where applicable) and details of who to contact for clinical escalation.
• Care plans are regularly reviewed to ensure they align with the individual’s changing needs.

5.3 Information, Language, Communication and Advocacy (Including Llais)

We will identify and record each person’s communication needs and preferences as part of assessment and review, including: preferred language (including Welsh language preference), sensory needs (hearing/vision), cognitive needs, and any communication aids required (e.g., glasses, hearing aids, BSL support, communication boards). We will provide information in a way the person can understand and will provide support to help them participate in decisions.

We will proactively inform individuals (and where appropriate their representatives) about how to access independent advocacy. Where a person wants support to express their wishes, make decisions, raise concerns, or make a complaint, we will support them to access appropriate advocacy services, including the Citizen Voice Body for Health and Social Care (Llais) where relevant.

6. Pain and Symptom Management

Effective pain and symptom control is a core priority in palliative care. We work with:

• GPs and district nurses to ensure appropriate medication management.
• Palliative care teams to provide expert symptom relief.
• Physiotherapists and occupational therapists to improve mobility and comfort.

How we manage this efficiently:

• Care staff are trained to identify signs of pain or discomfort.
• Protocols for medication administration are strictly followed.
• Daily symptom monitoring ensures prompt interventions.

6.1 Medicines Management in End-of-Life Care (Including Anticipatory Medicines)

End-of-life care often involves frequent medicine changes and the use of “anticipatory” (as required) medicines. We will ensure medicines support is delivered in line with our Medication Management Policy (DCW21) and CIW requirements by:

• confirming the current medicines list/MAR chart at each visit where medicines support is provided;
• safely storing medicines in the person’s home (including controlled drugs where present) and reporting any concerns about storage, missing medicines or administration errors immediately;
• recording administration, refusal, omissions and PRN outcomes clearly and contemporaneously;
• supporting timely re-ordering and prompt reporting when supplies are low;
• following clear processes for disposal/return of medicines (including controlled drugs) when no longer required or after death, in line with agreed local arrangements (e.g., return to pharmacy) and documenting the action taken; and
• ensuring staff only undertake medicines tasks they are trained and assessed as competent to do.
  Where any medicines task is delegated by a healthcare professional (for example, aspects of end-of-life medicines support), we will only accept delegation where there is clear written direction, training and competency assessment, and an agreed plan for supervision and review.

7. Emotional, Psychological, and Spiritual Support

Palliative care should address not just physical symptoms, but also emotional, psychological, and spiritual well-being.

We offer:

• Counselling and emotional support for individuals and families.
• Bereavement support and signposting to grief counselling services.
• Spiritual care, respecting individual faiths and cultural needs.

How we manage this efficiently:

• Care staff receive specialist training in grief support and active listening.
• Families are provided with resources and guidance on coping with loss.
• Religious representatives are available upon request for spiritual care.

8. Family and Carer Involvement

Families play a crucial role in end-of-life care. We ensure:

• Regular family meetings to discuss the individual’s care plan.
• Guidance on supporting their loved one at home.
• Emotional support to prepare them for the individual’s passing.

How we manage this efficiently:

• A dedicated key worker ensures clear communication with families.
• Printed and online resources are provided to help families navigate end-of-life care.

8.1 Concerns, Complaints and Feedback During End-of-Life Care

We recognise that concerns can arise at an emotionally difficult time. Individuals and families can raise concerns verbally or in writing at any time. Staff will respond respectfully, record the concern, and escalate immediately to the Registered Manager (or on-call manager) where the concern relates to safety, dignity, medicines, communication or safeguarding.

We will provide information in an accessible format on how to make a complaint and how the complaint will be handled, including timescales. We will also provide information on independent advocacy and how to access the Citizen Voice Body (Llais) where appropriate. Individuals and families will not experience any disadvantage as a result of raising a concern or complaint.

9. End-of-Life Care in the Final Days

As a service user approaches the final stage of life, we focus on:

• Providing round-the-clock care and support.
• Minimising distress and discomfort.
• Ensuring family members are present and supported if they wish.
• Ensuring the personal plan reflects current guidance, the person’s wishes, and any advance decisions/advance statements, including who to contact for urgent clinical review.
• Maintaining continuity of staff wherever possible and ensuring any new/covering staff are fully briefed on the person’s end-of-life plan and preferences.
• Working collaboratively with district nursing/GP/palliative care teams to escalate promptly if symptoms are not controlled or needs change.

How we manage this efficiently:

• A rapid response protocol ensures all necessary support is in place.
• Care teams remain flexible to meet changing needs.
• 24/7 support is available for families requiring guidance and reassurance.

10. After Death Care and Bereavement Support

Following a service user’s death, we will act with dignity, respect and cultural sensitivity, and support the family/carers in line with the person’s wishes.

10.1 Immediate actions

• If death is expected, staff will follow the person’s documented plan and contact the appropriate professional (e.g., district nurse/GP/out-of-hours) and the family/representative as agreed.
• If death is unexpected, or there is any uncertainty, staff will call 999 and follow safeguarding/incident procedures.
• Care staff must not verify death unless they have been specifically trained and authorised to do so under an agreed local protocol.

10.2 Care after death

• Provide privacy; support family members present; offer practical guidance on what will happen next.
• Respect religious, spiritual and cultural practices, and any instructions about touching or moving the person.
• Complete care after death tasks only within staff role/competence and in line with risk assessment and infection prevention and control guidance.

10.3 Records, property and medicines

• Record all key events, contacts made, and actions taken in the care record promptly and accurately.
• Document and secure any property/valuables handled in line with company procedure.
• Follow medicines procedures for securing and arranging return/disposal of medicines after death (including controlled drugs), and record the action taken.

10.4 Bereavement support

We will offer condolences, provide information on bereavement support, and signpost to appropriate services (including specialist bereavement support) according to family needs and preference.

11. Related Policies

This policy aligns with:

• Safeguarding Adults Policy (DCW13)​.
• Medication Management Policy (DCW21)​.
• Risk Management and Assessment Policy (DCW18)​.
• Mental Capacity and DNAR Policy (DCW39)​.
• Complaints Policy and Procedure (Regulation 64)
• Duty of Candour Policy/Procedure
• Language and Communication / Welsh Language Active Offer arrangements
• Records Management, Confidentiality and Data Protection Policy
• Incident Reporting and CIW Notifications Procedure
• Infection Prevention and Control Policy
• Staff Training, Supervision and Competency Assessment Policy
• Whistleblowing Policy

12. Policy Review

This policy will be reviewed annually or sooner if required due to legislative changes, business needs, or CIW updates. The Registered Manager and Responsible Individual are responsible for ensuring compliance. This policy will also be reviewed following any changes to CIW inspection frameworks and inspection ratings requirements (effective from 1 April 2025).

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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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