CHW38-End of Life and Palliative Care Policy

Registration Number: {{org_field_registration_no}}

End of Life and Palliative Care Policy

1. Purpose

The purpose of this policy is to ensure that all residents at {{org_field_name}} receive compassionate, dignified, and person-centred end-of-life and palliative care. Our approach is to enhance the quality of life for residents with life-limiting conditions by providing symptom control, emotional support, and spiritual care while respecting their wishes and preferences. This policy aligns with the Regulation and Inspection of Social Care (Wales) Act 2016, the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017 (as amended), the Welsh Ministers’ statutory guidance for providers of care home and domiciliary support services (updated March 2024), the Social Services and Well-being (Wales) Act 2014, the Mental Capacity Act 2005, Deprivation of Liberty Safeguards, Social Care Wales codes and guidance, and relevant NHS Wales guidance on advance and future care planning, DNACPR and end-of-life care.

2. Scope

This policy applies to all staff, including care workers, nurses, management, and multi-disciplinary professionals involved in palliative and end-of-life care at {{org_field_name}}. It also extends to the families and loved ones of residents, ensuring that they are supported throughout the process. This policy also applies to agency staff, bank staff, volunteers, visiting professionals and contractors where their role brings them into contact with residents receiving palliative or end-of-life care. All such persons must work in line with the resident’s personal plan, risk assessments, lawful decision-making arrangements and the service’s policies on safeguarding, medicines, complaints, duty of candour, record keeping and Welsh language / communication needs.

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

We are committed to delivering end-of-life care based on the following principles:

Person-Centred Care: Care is tailored to the individual’s needs, preferences, and values.
Dignity and Respect: Residents are treated with dignity, ensuring their comfort and wishes are respected.
Holistic Support: Physical, emotional, psychological, and spiritual needs are addressed.
Collaborative Approach: Multi-disciplinary professionals, families, and advocates work together to provide the best possible care.
Pain and Symptom Management: Effective pain relief and symptom control are prioritised to enhance the resident’s comfort.
Advance Care Planning: Residents’ end-of-life care preferences are documented and followed.
Rights, Capacity and Lawful Decision-Making: Care is delivered in accordance with the Mental Capacity Act 2005. Where a resident lacks capacity for a specific decision, decisions will be made in their best interests, taking account of any valid Advance Decision to Refuse Treatment, any attorney appointed under a Health and Welfare Lasting Power of Attorney, any court-appointed deputy, and the views of those important to the resident.
Communication and Welsh Language Needs: Residents will be supported to communicate in their language and preferred method of communication, including Welsh where this is the resident’s language of need or choice.
Advocacy and Voice: Residents and, where appropriate, their representatives will be given information about advocacy support, including independent advocacy and Llais, so that they can participate in decisions and raise concerns.
Openness and Candour: The service will act openly and transparently with residents and representatives when concerns, incidents, avoidable harm or service failures occur, and will apologise, explain what happened, and take learning forward.
Support for Families and Loved Ones: Bereavement support is provided to relatives and close friends.

4. Advance Care Planning

Planning for end-of-life care is essential to ensure residents’ wishes, values and legally relevant decisions are known, recorded, reviewed and respected.

Early and Sensitive Conversations: Advance and future care planning discussions will be offered at an appropriate time and revisited when needs change. Discussions will be person-centred, sensitive, and recorded clearly. They will cover what matters most to the resident, their goals of care, cultural and spiritual wishes, preferred place of care, preferred place of death where appropriate, family involvement, and any concerns about treatment or hospital transfer.
Advance Statements and Advance Decisions: Where relevant, the service will record any advance statement of wishes and preferences and any valid and applicable Advance Decision to Refuse Treatment (ADRT). Staff will distinguish clearly between a resident’s general preferences, legally binding treatment refusals, and clinical decisions made by healthcare professionals.
DNACPR / CPR Decisions: Decisions about cardiopulmonary resuscitation will be made and recorded in line with current NHS Wales / All-Wales DNACPR arrangements. Staff must understand that a DNACPR decision relates only to CPR and does not mean that other appropriate treatment, symptom control, comfort care or review will be withheld. The existence, location, review status and any transfer implications of the DNACPR documentation must be recorded in the resident’s personal plan.
Capacity, Best Interests and Representatives: If the resident has capacity, they will be supported to make their own decisions. If the resident lacks capacity for a particular decision, the service will act in accordance with the Mental Capacity Act 2005 and best interests principles. The service will identify and record any Health and Welfare Lasting Power of Attorney, court-appointed deputy, Independent Mental Capacity Advocate involvement where required, and those close to the resident who should be consulted.
Preferred Place of Care and Treatment Escalation: Where possible and clinically appropriate, the service will support the resident’s preference regarding place of care and treatment, including whether care is to continue in the home, hospice or hospital. Escalation decisions, ceilings of treatment and transfer arrangements will be recorded and shared with relevant professionals.
Review of Plans: Advance care planning information must be reviewed whenever the resident’s condition changes, after any hospital admission or discharge, after any material change to DNACPR or treatment recommendations, and at regular care plan reviews.

5. Pain and Symptom Management

Ensuring comfort and minimising distress is a core part of our end-of-life care approach.

Pain Assessment: Regular pain assessments using recognised tools ensure effective pain management. Pain and symptom assessment must take account of residents who may have cognitive impairment, delirium, dementia, communication difficulties or learning disability, so that discomfort is not missed.
Medication Management: Staff are trained in administering appropriate pain relief and symptom control medication in line with medical prescriptions. Anticipatory medicines, syringe driver arrangements, PRN symptom relief, and administration authorisations will be managed in accordance with the home’s medicines policy, prescriber instructions and current professional guidance. The service will ensure timely access to prescribers, pharmacists, district nursing and specialist palliative care advice where symptom control becomes complex or urgent.
Non-Pharmacological Support: Complementary therapies such as massage, music therapy, and relaxation techniques may be offered.
Palliative Care Team Referrals: We work closely with specialist palliative care teams to provide expert support when needed.

6. Emotional and Psychological Support

Emotional well-being is as important as physical care during end-of-life.

Emotional Support for Residents: Residents receive personalised support to address fears, anxieties, and emotional distress.
Family and Loved Ones: Families are provided with counselling, guidance, and practical support during this difficult time.
Bereavement Support: Relatives are offered continued support after a resident’s passing, including signposting to external bereavement counselling services.

Residents will be supported to maintain important relationships and, where appropriate, to have those important to them present, including in their own room during the last days of life, subject to the safety, wishes and well-being of the resident and other people living in the home.

7. Spiritual and Cultural Considerations

Respecting religious, spiritual, and cultural needs is a fundamental part of end-of-life care.

Religious Practices: Residents are supported to engage in religious rituals and ceremonies according to their beliefs.
Spiritual Care Providers: Chaplains, religious leaders, or spiritual advisers are invited to provide support where requested.
Cultural Sensitivity: Cultural preferences related to end-of-life care, such as dietary requirements, dress, or burial practices, are respected and facilitated.

The resident’s language, faith, belief, culture, sexuality, gender identity, family structure and other protected characteristics will be respected when planning and delivering end-of-life care and after-death care.

8. Involvement of Multi-Disciplinary Teams

A collaborative approach ensures that residents receive the best possible care.

GP and Medical Professionals: The home will work with the resident’s GP, out-of-hours services, district nursing, community nursing and other medical professionals to review condition changes, symptom control, treatment decisions and certification processes.
Specialist Palliative Care Teams: Referral will be made promptly to specialist palliative care services where symptoms are complex, there is uncertainty about prognosis, additional family support is needed, or specialist end-of-life advice is required.
Pharmacy and Allied Health Professionals: Pharmacists and relevant allied health professionals will be involved where needed to support medicines optimisation, equipment, comfort, mobility, communication, nutrition or other specialist needs.
Advocacy and Social Support: Residents will be supported to access advocacy, including Llais and other independent advocacy services where appropriate, especially when they have substantial difficulty participating in decisions or wish to raise concerns.

9. Communication and Documentation

Effective communication and accurate record-keeping are essential for delivering high-quality end-of-life care.

Clear Communication: Open, honest and sensitive communication will take place with the resident and, where appropriate, their representative, family and relevant professionals. Information will be provided in a format the resident can understand and in their language of need or choice where reasonably practicable, including Welsh.
Personal Plan and Clinical Records: The resident’s personal plan must clearly record end-of-life wishes and preferences, communication needs, capacity assessments where relevant, best interests decisions, DNACPR status, advance statements, ADRTs, Health and Welfare LPA / deputy details, symptom management plans, spiritual and cultural wishes, family contact arrangements and after-death wishes where known.
Review and Handover: Records must be reviewed when needs change and shared appropriately on transfer between the care home, hospital, hospice and community teams so there is continuity of care.
Record of Professional Contacts: Contacts with GPs, district nurses, specialist palliative care teams, pharmacies and other professionals, including advice received and actions taken, must be recorded promptly and clearly.
Duty of Candour Recording: Where something goes wrong, records must show what happened, who was informed, what apology or explanation was given, what immediate action was taken, and what learning or improvement followed.

10. Care After Death

Following a resident’s death, the service will respond promptly, respectfully and compassionately, in line with the resident’s wishes where known, the needs of those close to them, legal requirements, local procedures and professional guidance.

Verification / Confirmation of Death: The service will follow current Welsh law, NHS Wales arrangements and local professional procedures for the confirmation or verification of death. Staff must not act outside the limits of their competence, role, training or local protocol.
Certification and Medical Examiner Process: The service will cooperate promptly with the attending clinician, medical examiner service and, where relevant, the coroner, and will maintain accurate records to support the death certification process in Wales.
Immediate Actions and Family Contact: Those important to the resident will be informed promptly and compassionately, in accordance with the resident’s recorded wishes and confidentiality requirements. Staff will explain immediate next steps, offer privacy and practical support, and signpost relatives to bereavement information and services.
Respectful Care of the Deceased Person: The deceased person will be cared for with dignity and respect. Personal, religious, spiritual and cultural wishes relating to last offices, dress, property, viewing, and funeral arrangements will be respected wherever possible and lawful.
Property, Documentation and Notifications: The service will complete all required internal records, body release documentation, property records and statutory notifications. Where required by the regulations, the service will notify CIW of a resident’s death and the circumstances without delay using the required CIW process.
Learning and Review: Following a death, the service will review the care provided, identify any good practice or learning, and take forward any necessary improvement actions.

11. Training and Staff Development

All staff receive specialised training to ensure the highest standards of end-of-life care.

Mandatory and Role-Specific Training: Staff involved in end-of-life care will receive training appropriate to their role in palliative and end-of-life care, communication skills, pain and symptom recognition, medicines support, hydration and nutrition, recognising deterioration, dementia and cognitive impairment, bereavement support, safeguarding, duty of candour, Mental Capacity Act 2005, Deprivation of Liberty Safeguards and equality / Welsh language needs.
Competence and Escalation: Staff must understand the limits of their competence and when to escalate concerns to registered nurses, GPs, district nurses, specialist palliative care teams or emergency services.
Supervision and Reflection: Staff will receive supervision, reflective discussion and support following deaths and difficult end-of-life situations to maintain safe practice and emotional resilience.
Ongoing Learning: The service will monitor training completion, competence and learning needs through induction, supervision, appraisal, audit and quality review processes.

12. Compliance and Quality Assurance

To maintain excellence in end-of-life care, we conduct regular evaluations and audits.

Audit and Review: The service will monitor the quality of end-of-life care through audit, review of records, feedback from residents and families, complaints, incidents, safeguarding matters, professional input and post-death reviews.
Feedback and Improvement: Feedback from residents, families, advocates, staff, commissioners and professionals will be used to identify learning and improve practice.
CIW and Statutory Compliance: The service will operate this policy in line with the Regulation and Inspection of Social Care (Wales) Act 2016, the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017 (as amended), Welsh statutory guidance and CIW requirements.
Notifications and Openness: Notifiable events, including death and relevant incidents, will be reported through CIW’s required notification process. Where concerns arise about care quality or safety, the service will act openly, investigate appropriately and take remedial action.

13. Complaints, Advocacy and Raising Concerns

Residents and their representatives must be given information, in an accessible format, about how to raise a concern, make a complaint, or seek advocacy support. This includes the home’s complaints procedure, how to access independent advocacy, and how to contact Llais, CIW and the Public Services Ombudsman for Wales if they remain dissatisfied or wish to raise concerns outside the service.

No resident, relative, representative or staff member will be treated unfairly because they raise a concern or complaint. Concerns relating to safety, neglect, poor practice or possible abuse will be acted on promptly and, where required, referred under safeguarding procedures.

Complaints, concerns and feedback relating to end-of-life care will be reviewed as part of the service’s quality assurance and improvement processes.

14. Equality, Welsh Language and Accessible Communication

The service will take reasonable steps to meet each resident’s language, communication and accessibility needs throughout palliative and end-of-life care. Information and discussions will be adapted to the resident’s level of understanding, sensory needs, cognitive needs and preferred method of communication.

Where Welsh is the resident’s language of need or choice, the service will support care and communication through Welsh as far as reasonably practicable and in line with the resident’s well-being, preferences and communication needs.

Staff will also take account of protected characteristics and individual identity so that end-of-life care is non-discriminatory, respectful and person-centred.

15. Related Policies

This policy should be read in conjunction with:

CHW07 – Person-Centred Care Policy
CHW11 – Safe Care and Treatment Policy
CHW13 – Safeguarding Adults from Abuse and Improper Treatment Policy
CHW36 – Moving and Handling Policy
CHW41 – Managing Service User Finances Policy

16. Policy Review

This policy will be reviewed annually or sooner if there are changes in legislation, regulatory requirements, or organisational needs. Any updates will be communicated to all staff through training sessions and policy briefings.

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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