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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 safe, compassionate, lawful and person-centred end of life and palliative care support to people living in supported living services who have a life-limiting condition or who may be approaching the end of life. This policy is implemented in line with the Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, including Regulation 9 (Person-Centred Care), Regulation 10 (Dignity and Respect), Regulation 11 (Need for Consent), Regulation 12 (Safe Care and Treatment), Regulation 13 (Safeguarding Service Users from Abuse and Improper Treatment), Regulation 16 (Receiving and Acting on Complaints), Regulation 17 (Good Governance), Regulation 18 (Staffing), Regulation 19 (Fit and Proper Persons Employed) and Regulation 20 (Duty of Candour), together with the Care Quality Commission (Registration) Regulations 2009 in relation to notification of deaths and other incidents. This policy also reflects the Mental Capacity Act 2005, the Human Rights Act 1998, the Equality Act 2010, relevant information-governance requirements, and NHS England’s Universal Principles for Advance Care Planning.

This policy ensures that:

• People receiving end of life care are treated with dignity, compassion, and respect.
• Care is planned according to the individual’s wishes, values, and cultural preferences.
• Staff are trained and competent in delivering palliative care support.
• Effective pain management and symptom control are provided in partnership with healthcare professionals.
• Families and carers receive emotional support and bereavement care.

In supported living, staff provide care and support within the scope of their role, competence, training and delegation arrangements, and work in partnership with GPs, community nursing teams, specialist palliative care services, pharmacists, hospices, emergency services and other professionals where clinical assessment, prescribing, verification of death or certification is required.

2. Scope

This policy applies to all staff involved in supporting individuals receiving palliative or end of life care at {{org_field_name}}. It covers:

• Identifying individuals requiring palliative care planning.
• Developing Advance Care Plans (ACP) and Do Not Attempt Resuscitation (DNAR) decisions.
• Managing pain, symptom relief, and emotional well-being.
• Coordination with hospice, GP, district nurses, and specialist palliative care teams.
• Supporting families and carers before, during, and after end of life care.

This policy also covers:

• assessing, recording, reviewing and sharing people’s preferences and choices for end of life care, including preferred place of care, preferred place of death, communication needs, cultural, spiritual and religious needs, and any protected characteristics relevant to care delivery;
• obtaining valid consent and applying the Mental Capacity Act 2005 where a person may lack capacity for a specific decision;
• the use of Advance Care Planning (ACP), Advance Decisions to Refuse Treatment (ADRT), health and welfare Lasting Powers of Attorney (LPA), court-appointed deputies where applicable, and locally used emergency care planning documents such as ReSPECT where these are in place;
• escalation arrangements for deterioration, urgent symptom control, anticipatory medicines, access to equipment, and out-of-hours support;
• lawful information-sharing, record-keeping, confidentiality and secure handling of end of life documentation;
• actions following death, including immediate support for others, contact with appropriate professionals, handling of medicines and property, internal reporting, external notifications and learning reviews; and
• receiving, investigating and learning from complaints, concerns, incidents, safeguarding issues and near misses linked to end of life care.

3. Principles of End of Life and Palliative Care

Person-Centred and Holistic Approach

• Care is planned with the individual’s preferences, beliefs, and values at the centre.
• End of life wishes are discussed sensitively and respectfully, ensuring individuals are involved in decisions.
• The Mental Capacity Act 2005 is followed when supporting decision-making.

Information and discussions about end of life care must be provided in a way the person can understand, with reasonable adjustments and communication support where required. Care planning must take account of the person’s communication needs, protected equality characteristics, relationships, history, routines, identity, sexuality, culture, faith and beliefs. Preferences must not be recorded once and forgotten; they must be reviewed regularly and whenever the person’s condition, wishes, risks or circumstances change.

• Multi-disciplinary team involvement ensures a holistic approach to care.

Identifying and Planning Palliative Care

• Early identification of individuals needing palliative care using the Gold Standards Framework (GSF).
• A Comprehensive End of Life Assessment is carried out covering:
  • Physical, emotional, and psychological needs.
  • Preferred place of care and preferred place of death.
  • Religious, cultural, and spiritual beliefs.
  • Communication needs and how the person wishes to be involved in decisions.

Advance care planning must be offered as an ongoing, person-led process and not as a one-off form-filling exercise. Where a person has capacity and wishes to do so, staff must support timely discussions with the person and relevant professionals about what matters to them, their goals, fears, preferred place of care, preferred place of death, who they want involved, what should happen in an emergency, and any treatments or interventions they would or would not want. Any agreed outcomes must be clearly documented, dated, reviewed, and shared lawfully with relevant professionals and services involved in the person’s care.

Staff must recognise that different legal and clinical documents have different purposes. An Advance Care Plan records wishes and preferences. An Advance Decision to Refuse Treatment (ADRT) is a legally recognised decision made by a person with capacity to refuse specified treatment in specified future circumstances. A health and welfare Lasting Power of Attorney may allow an appointed attorney to make certain health and care decisions when the person lacks capacity. ReSPECT or other local emergency care treatment plans record clinical recommendations arising from conversations between the person and appropriately qualified clinicians. Staff must not treat these documents as interchangeable and must act only within the scope of their role.

The service must work in partnership with GPs, community nursing teams, specialist palliative care teams, pharmacists, hospitals, hospices, ambulance services and out-of-hours providers so that current care plans, escalation plans, medicines plans and key contacts are available when needed.

Mental Capacity, Consent and Advocacy

All care and support at the end of life must be delivered with the person’s valid consent unless another lawful basis applies. Capacity is decision-specific and time-specific. Staff must presume capacity unless it is established otherwise, provide all practicable support to help the person make the decision, and avoid making assumptions based on diagnosis, appearance, behaviour, communication style or unwise decisions.

Where there is reason to doubt capacity for a particular decision, an appropriate assessment of mental capacity must be completed and recorded. If the person lacks capacity, any decision made on their behalf must be made in their best interests, be the least restrictive option, and take into account the person’s past and present wishes, feelings, beliefs and values, together with the views of those lawfully involved in the person’s care.

Staff must check for the existence of any Advance Decision to Refuse Treatment, health and welfare Lasting Power of Attorney, deputyship order, or other relevant legal authority and must promptly share relevant information with the appropriate clinician or decision-maker. Where required by law, or where additional support is needed to protect the person’s rights and involvement in decision-making, referral for advocacy or Independent Mental Capacity Advocate (IMCA) involvement must be considered without delay.

Pain and Symptom Management

• Effective pain control is a priority, ensuring individuals remain comfortable.
• Staff are trained to recognise and respond to symptoms such as:
  • Pain, breathlessness, nausea, anxiety, agitation.

Medicines used in end of life care must be managed safely, lawfully and in accordance with current medicines policy, prescriber instructions, local protocols and delegation arrangements. Only appropriately authorised prescribers may prescribe medicines. Staff must promptly escalate uncontrolled symptoms, suspected side effects, omitted doses, changes in swallowing, reduced oral intake, reduced consciousness, syringe driver concerns, or difficulties accessing time-critical medicines. Where anticipatory medicines are prescribed, staff must follow the care plan, storage requirements, administration instructions, monitoring arrangements and escalation procedures, and must record the effect of treatment and any concerns without delay.

The service must take reasonable steps to ensure timely access to medicines, equipment and professional advice needed to keep the person comfortable, especially during evenings, nights, weekends and bank holidays.

• Non-medical interventions (e.g., relaxation techniques, holistic therapies) are incorporated where appropriate.

Emotional, Psychological, and Spiritual Support

• Emotional and psychological support is provided through counselling, pastoral care, or external support networks.
• Spiritual care is facilitated by chaplains, faith leaders, or community groups according to the individual’s preferences.
• Staff receive training on active listening, empathy, and emotional resilience when supporting individuals and families.

Family and Carer Involvement

• Families and carers are included in care planning and decisions wherever possible.
• Clear and sensitive communication is maintained throughout the individual’s journey.
• Emotional support is provided to family members, and signposting to bereavement support services is offered.
• Families are informed about expected changes during end of life care to prepare them.

Respecting Choices: Advance Care Planning, ADRT, LPAs and DNACPR/ReSPECT

{{org_field_name}} will respect lawful and properly documented decisions and recommendations relating to future care and treatment. Staff must understand the difference between:

• an Advance Care Plan, which records wishes, values and preferences;
• an Advance Decision to Refuse Treatment (ADRT), which may be legally binding if valid and applicable;
• a health and welfare Lasting Power of Attorney, which may give an attorney authority to make specified health and care decisions when the person lacks capacity; and
• a DNACPR decision or ReSPECT plan, which is normally completed by an appropriately qualified clinician following discussion with the person and/or those lawfully involved.

Staff must not initiate, amend or cancel DNACPR decisions themselves unless they are authorised and competent to do so within their professional role. Where a DNACPR form, ReSPECT plan, ADRT or LPA is in place, staff must make sure that a current copy is available, clearly flagged in the person’s records, shared lawfully with relevant professionals and emergency services where appropriate, and followed in accordance with the law, the care plan and local procedure.

A decision not to attempt CPR relates only to CPR and must not be interpreted as a decision to withhold other appropriate treatment, symptom relief, hydration support, comfort care, review, escalation or respect for dignity. Any uncertainty about the status, validity or applicability of a document must be escalated immediately to the relevant clinician or on-call service.

Coordination with External Services

• Collaborative working with:
  • Palliative care teams and hospices to ensure specialist input.
  • GPs and district nurses for ongoing clinical support.
  • Out-of-hours services to ensure continuity of care.
• Multi-disciplinary team (MDT) meetings are held regularly to review care plans.

The service must ensure that staff know who to contact for urgent advice and support at all times, including the GP, district nursing team, palliative care team, pharmacist, NHS 111, out-of-hours services and emergency services. Contact details, escalation criteria and emergency documentation must be current, accessible and known to staff on every shift.

Documentation, Information Sharing and Record Keeping

Accurate, contemporaneous and accessible records must be maintained throughout the person’s end of life journey. Records must include assessments, care plans, reviews, consent or capacity assessments, best-interests decisions, key discussions, involvement of relatives or advocates, current legal and clinical documents, escalation plans, medicines information, contact details for professionals, changes in condition, care delivered, and actions taken. Information must be shared lawfully, securely and in a timely way with those who need it for the person’s care and safety.

Dignity and Comfort in the Final Stages

• The individual’s privacy, dignity, and personal choices are upheld at all times.
• Symptom relief and continuous comfort measures are prioritised.
• Loved ones are given time, space, and support to be with the individual in their final moments.
• Staff provide reassurance and compassionate presence during this time.

During the last days and hours of life, staff must increase observation and communication in line with the person’s needs and care plan, promptly report significant changes, maintain comfort measures, offer mouth care and personal care, support family presence where appropriate, and minimise avoidable disturbance while ensuring safety. Any changes in responsiveness, breathing, agitation, pain, swallowing, continence, skin integrity or ability to take medicines must be recorded and escalated in line with the agreed plan.

After-Death Care, Notification and Bereavement Support

Following an expected death, staff must act calmly, respectfully and in accordance with the person’s care plan, local procedure and any cultural, religious or spiritual wishes known to the service. Staff must immediately inform the appropriate professional or service in line with the care plan and local arrangements, for example the GP, district nurse, palliative care team, out-of-hours service or emergency services, depending on the circumstances of the death.

Staff must not verify or certify death unless they are specifically trained, competent, authorised and working under an approved local procedure that permits them to do so. Where verification of death is not within the service’s remit, staff must seek prompt attendance from the appropriate clinician or service.

The person’s body must be treated with dignity and respect. Staff must preserve privacy, support those present, follow known cultural or faith requirements wherever possible, and avoid unnecessary disturbance of the environment or belongings until appropriate advice has been received. Controlled drugs, other medicines, records and personal property must be secured and managed in line with medicines, record-keeping and property procedures.

The service must complete all required internal reporting, contact next of kin or other appropriate persons in accordance with the care plan and consent/confidentiality arrangements, and make any required notifications to external bodies without delay, including notification to the Care Quality Commission where the legal threshold is met. Where there is any concern about unexpected death, neglect, abuse, poor care, medication error, trauma, or uncertainty about the circumstances, staff must escalate immediately for safeguarding, incident reporting, duty of candour and any coroner or police processes as required.

Families, friends, other people using the service and staff must be offered sensitive emotional support, practical information and signposting to bereavement services as appropriate.

Staff Training and Development

• All staff must receive end of life and palliative care training, supervision and competency assessment appropriate to their role, responsibilities and level of contact with people approaching the end of life.
• Ongoing learning includes:
  • Symptom management and medication use.
  • Communication skills for discussing sensitive topics.
  • Recognising and responding to changes in condition.
  • Emotional resilience and coping strategies.

Ongoing learning must include, where relevant to role:

• communication at the end of life, including difficult conversations and accessible communication;
• consent, mental capacity, best-interests decision-making and the role of ADRTs, LPAs and advocacy;
• recognising deterioration and the dying phase;
• symptom monitoring, comfort measures, mouth care and escalation;
• safe medicines practice, including anticipatory medicines where relevant;
• cultural, spiritual and equality considerations;
• after-death procedures, bereavement support, incident reporting and duty of candour; and
• staff wellbeing, reflective practice and debriefing.

Quality Monitoring and Continuous Improvement

The service will maintain effective governance systems to assess, monitor and improve the quality and safety of end of life care. This will include regular review of care records, advance care planning documentation, consent and mental capacity records, medicines management, incident reports, complaints, safeguarding concerns, external professional involvement, staff training and competency, and feedback from people, relatives and professionals.

End of life care audits must be used to identify good practice, shortfalls, patterns and risks, and to produce clear action plans with named leads and timescales. Learning from deaths, complaints, safeguarding enquiries, medication incidents and near misses must be shared with staff and used to improve practice, documentation, training, partnership working and service delivery.

Complaints, Incidents, Safeguarding and Duty of Candour

Any complaint, concern, medication error, delay in access to treatment, safeguarding issue, avoidable harm, deterioration not escalated appropriately, or failure to follow a person’s wishes or lawful care documents in relation to end of life care must be reported, investigated and acted on promptly. Where a notifiable safety incident has occurred, the service must act in an open and transparent way in line with the duty of candour. Complaints and incidents relating to end of life care must be analysed for themes and used to improve practice, communication, training and partnership working.

4. Roles and Responsibilities

• Registered Provider / Nominated Individual: Has overall accountability for ensuring that the organisation has systems, policies, resources, staffing, governance and oversight arrangements in place to support safe, lawful and person-centred end of life care.
• Registered Manager: Is responsible for local implementation of this policy, oversight of care quality, ensuring staff competence, confirming that clear escalation and reporting arrangements are in place, monitoring audits and incidents, and ensuring that required notifications, reviews and learning actions are completed.
• Clinical Lead / End of Life Lead / Designated Senior Person (where applicable): Supports complex care planning, liaison with health professionals, review of training and competency, and dissemination of good practice and learning.
• Team Leaders / Senior Support Staff: Must ensure that care plans and risk assessments are current, legal and clinical documents are available and clearly recorded, staff know the current escalation plan, and concerns are escalated promptly.
• All Staff: Must deliver care in accordance with the person’s wishes, assessed needs, this policy, their training and the limits of their role; must report deterioration or concerns without delay; must record care clearly; and must treat the person and those important to them with compassion, dignity and respect.
• Healthcare Professionals: Retain responsibility for clinical assessment, diagnosis, prescribing, verification or certification of death where applicable, and for clinical decisions such as DNACPR/ReSPECT recommendations unless formally delegated otherwise.
• Families, Attorneys, Advocates and Others Lawfully Involved: Should be involved appropriately and in line with consent, capacity, confidentiality and legal authority, to help ensure that care reflects the person’s wishes and best interests.

5. Related Policies

This policy should be read in conjunction with:

• SL07 – Person-Centred Care Policy
• SL08 – Dignity and Respect Policy
• SL09 – Consent to Care Policy
• SL12 – Pain Management Policy
• SL21 – Medication Management and Administration Policy
• SL25 – Safeguarding Adults from Abuse and Improper Treatment Policy
• SL42 – Communication and Engagement with Service Users and Families Policy

6. Policy Review

This policy will be reviewed at least annually and sooner where there is a change in legislation, regulation, national guidance, local clinical pathways, CQC guidance, learning from incidents or complaints, or organisational practice. The review will consider feedback from people using the service, relatives, advocates, staff and partner professionals, together with audit findings and learning from deaths and significant events. Any amendments will be communicated to staff and reflected in training, supervision, competency assessment and operational procedures.

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Responsible Person: {{org_field_registered_manager_first_name}} {{org_field_registered_manager_last_name}}
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