1.2. Summarise legislation, policy and guidance in relation to end of life care provision

This guide will help you answer 1.2. Summarise legislation, policy and guidance in relation to end of life care provision.

Providing high-quality care at the end of life is a fundamental responsibility for anyone working in the health and social care sector. In the UK, multiple laws, policies, and guidance documents influence how care at this stage of life is delivered. These frameworks aim to ensure dignity, respect, and compassion for individuals facing the end of life and their loved ones. This guide covers some of the legislation, policy, and guidance shaping end of life care.

Legislation Relating to End of Life

The Care Act 2014

The Care Act 2014 applies to adult social care in England. It highlights the importance of individualised care and dignity during the end of life. Under this law, local authorities must:

• Assess the needs of individuals and their carers.
• Provide appropriate care and support services.
• Ensure continuity of care if someone moves between local areas.

It also stresses the importance of preventing care needs from increasing unnecessarily by offering support early. The Act aligns with protecting human rights and person-centred approaches to care.

The Mental Capacity Act 2005

The Mental Capacity Act 2005 sets out how to support individuals who may lack the mental capacity to make decisions about their care. This is particularly relevant in end of life care, where individuals may become unable to express their preferences.

The Act outlines:

• How to assess a person’s capacity.
• The principle that decisions made for someone without capacity must be in their best interests.
• The use of advance decisions (commonly referred to as “living wills”). These allow individuals to refuse specific medical treatments in advance, in case they lose the ability to decide later.

The Equality Act 2010

The Equality Act 2010 prohibits discrimination based on protected characteristics such as age, disability, or religion. This law ensures that everyone has equal access to end of life care and prevents unfair treatment. For example, someone should not face discrimination in palliative care because of their cultural practices or beliefs.

Human Rights Act 1998

The Human Rights Act 1998 guarantees specific rights for everyone, which end-of-life care must respect. Particularly important rights include:

• Article 2: The right to life.
• Article 8: The right to respect for private and family life.
• Article 3: The right not to suffer inhuman or degrading treatment, which is vital for appropriate pain management.

Policies in End of Life Care

The Ambitions for Palliative and End of Life Care: A National Framework 2021-2026

This policy framework outlines six key ambitions to improve end of life care in England. These include:

1. Each person being seen as an individual with unique needs and preferences.
2. Fair access to care for everyone.
3. Maximising comfort and wellbeing, including managing pain and other symptoms.
4. Coordination between professionals and services to provide seamless care.
5. Staff being properly trained and supported to deliver end of life care.
6. Developing compassionate communities where families and friends are supported alongside individuals.

The focus is on person-centred care, ensuring that services wrap around an individual and their specific requirements.

The End of Life Care Strategy (2008)

The End of Life Care Strategy, published by the Department of Health, was a turning point for end of life care in England. It aimed to improve care quality and increase support for families and carers. Key goals included:

• Better identification of people approaching the end of life.
• Encouraging discussions about people’s preferences for care.
• Promoting Advance Care Planning.
• Providing bereavement support for loved ones after a death.

The strategy also introduced training initiatives to support staff in delivering effective and sensitive care.

Best Practices for End of Life Care

NICE Quality Standards

The National Institute for Health and Care Excellence (NICE) provides evidence-based guidance to support providers in delivering end of life care. Its quality standards focus on areas such as:

• Identifying when someone is approaching the end of life.
• Ensuring personal preferences and wishes guide care plans.
• Offering holistic support that considers emotional, psychological, and spiritual needs.
• Managing symptoms like pain, breathlessness, and nausea.
• Supporting families and carers during and after the care process.

NICE guidelines often recommend tools like the “Gold Standards Framework” to assist in assessing and planning end of life care.

Advance Care Planning Guidance

Advance Care Planning (ACP) allows individuals to express their wishes for future care. This includes decisions like:

• Preferred place of care (e.g., at home, in a hospice, or hospital).
• Treatment preferences or refusals.
• Who they would like to make decisions for them if they lack capacity (called a Lasting Power of Attorney for Health and Welfare).

Care providers follow ACP guidelines to ensure that plans are documented clearly and respected when possible.

General Medical Council (GMC) Guidance

The GMC provides specific guidance for doctors on caring for people at the end of life. Key areas covered include:

• Planning and coordinating care.
• Recognising when someone is nearing the end of life.
• Communicating with patients and families in an honest yet sensitive way.
• Balancing pain relief with maintaining consciousness, based on individual preferences.

Local Policies and Procedures

While national legislation and guidance shape practice, care organisations often implement their own internal policies. These reflect the unique needs of local communities and align with national standards.

Care workers must familiarise themselves with their employer’s procedures, which might include:

• Protocols for administering palliative medications.
• Processes for involving a multidisciplinary team to discuss complex cases.
• Frameworks for involving bereavement support services.

Holistic Care Principles in Guidance

Most legislation, policies, and guidance emphasise the value of holistic care. This means care that not only attends to the person’s physical needs but also their psychological, social, and spiritual wellbeing. Some holistic approaches in end of life care include:

• Providing counselling or emotional support for those coming to terms with a terminal diagnosis.
• Incorporating spiritual or religious values into care plans where appropriate.
• Involving family members in discussions about care preferences to support their emotional needs as carers.

Training and Support for Staff

Staff play a huge role in delivering end of life care. To do this effectively, staff must feel confident and equipped. Policies encourage access to high-quality training, covering areas like:

• Communication skills to handle sensitive conversations.
• Understanding how to manage challenging symptoms like severe pain or nausea.
• Supporting cultural competence so care workers can meet diverse needs.

Supporting carers is just as important. The health and wellbeing of carers often affect the quality of care individuals receive.

The Role of Public Involvement

Many frameworks highlight the role of public awareness in improving end of life care. Open discussions about death and dying can remove some of the stigma, promoting better planning and understanding. Campaigns like Dying Matters encourage people to talk about their wishes for end of life care.

Respecting Cultural and Religious Diversity

Guidance stresses the need to provide culturally sensitive care. Respecting traditions, customs, and religious needs at the end of life is a key part of treating people with dignity. For example:

• Some religions have specific rites or prayers that caregivers should accommodate.
• Cultural preferences may shape decisions about the preferred place of death or burial customs.

Training for health and care staff often includes information about cultural competence to help meet these needs.

Challenges in End of Life Care

Despite robust frameworks, there are challenges in delivering consistent end of life care. These include:

• Access to services in rural or remote areas.
• Ensuring all staff are adequately trained, particularly in non-specialist settings.
• Managing complex conditions such as advanced dementia alongside end of life care needs.
• Balancing limited resources with the need for person-centred approaches.

Final Thoughts

Legislation like the Care Act and the Mental Capacity Act sets clear expectations. National frameworks like NICE guidelines and the End of Life Care Strategy provide best-practice approaches. Together, they ensure individuals receive high-quality, respectful care at the end of life. Workers in health and social care should engage with these frameworks in everyday practice. This ensures they meet legal requirements and deliver compassionate, person-centred care.