Legislation and frameworks for end of life care

The Mental Capacity Act 2005 provides a framework to protect people who lack the capacity to make certain decisions for themselves. It sets out key principles of capacity, how it should be assessed, and what to do if someone lacks capacity.
The Advance Decision to Refuse Treatment (ADRT) allows individuals to refuse specific types of health care in the future when they may lack the capacity to consent or refuse.
Lasting Power of Attorney (LPA) for health and welfare is a legal document where people can nominate someone they trust to make decisions about their health and social care should they lose capacity.
The Care Act 2014 provides a framework for local authorities’ responsibilities for providing care and support for adults and their carers. It promotes wellbeing, preventing or delaying needs, and integration of care services.
The End of Life Care Strategy (2008) is a comprehensive framework aimed at promoting high-quality care for all adults at the end of life. It outlines the models and pathways of care, roles of different professionals, and quality markers and measures.

Key Concepts of End of Life Legislation and Frameworks

Individual autonomy and respect for patient’s preferences are at the heart of these legislations and frameworks. The patient’s wishes and rights in decision-making are prioritised – whether it’s about treatment, place of care, or place of death.
Capacity and informed consent are crucial. Any medical treatment or care provided must be with the person’s consent, unless they lack capacity to make that decision. Then, decisions are guided by their best interests.
Best interest decisions come into play when an individual cannot make a decision for themselves. The decision-maker must consider the individual’s past wishes, feelings, and values when making decisions.
Confidentiality and information sharing in accordance with Data Protection Act principles is necessary. In end of life care, sensitive information often needs to be shared among healthcare professionals to provide coordinated care.
Maintaining dignity and respect throughout care givers’ activities is an underpinning principle in all end of life care legislation and frameworks. Regardless of a patient’s health status or the care setting, they must be treated with compassion and respect.
Equality and non-discrimination under the Equality Act 2010 means that care providers cannot discriminate, harass or victimise because of a person’s protected characteristics. This includes their age, disability, gender, race, or religion.
Quality of care and life are core aims of end of life care legislation and frameworks. They aim to ensure that individuals receive person-centred, holistic, and high quality care that relieves suffering and improves their quality of life.