Assessing Palliative and End of Life Care Provision in England from a Human Rights Perspective

Abstract

Introduction: People approaching the end of life are extremely vulnerable and need special protection, not only through professional codes of conduct but also legislation. Palliative and End of Life Care (P&EOLC) is recognised under international human rights’ legislation as a basic human right. Under Article 12 of the International Covenant on Economic, Social and Cultural Rights and Article 7 of the International Covenant on Civil and Political Rights, all member countries of the UN are obliged to safeguard patients at the end of life against pain and suffering, allowing them to die with dignity. Suffering includes: physical, psychological, sociological, spiritual and existential which are often interdependent requiring the palliative approach to holistic assessment and management. Increasing physical, psychological and social frailty often leaves patients dependent on family and professionals for the most basic activities of daily living. This may result in loss of the patient’s autonomy and dignity.  To-date the human rights approach to P&EOLC has primarily focussed on relief of suffering, especially pain and symptoms. In 1998, the European Convention on Human Rights was incorporated into the UK Human Rights Act 1998 (HRA 1998). This has wide implications for P&EOLC as the HRA places a legal duty on public officials to respect human rights in everything they do and all legislation including health and social care laws must be compliant with the HRA 1998. Today, one of the biggest challenges for P&EOLC is to expand beyond the care of cancer patients to meet the needs of the increasing numbers of people dying in old age with multi-morbidity, prolonged frailty and dementia. 

Aim: To assess delivery of P&EOLC in England against a Legislative Framework of Human Rights derived from the Human Rights Act 1998.

Methods: Development of a Framework for assessment of P&EOLC provision based on the relevant Articles of the HRA 1998: Article 2 (Protection of Life), Article 3 (Alleviation of suffering  and protection against inhumane or degrading treatment) Article 8 (The right to a private and family life under which autonomous choice is located), Article 5 (The right to liberty), Article 9 (The right to freedom of thought, conscience and religion), Article 14 (The right to enjoy these human rights without discrimination).

Results: The diffusion of Human Rights’ principles through health and social care law, policy, regulatory activity and professional regulations and guidelines ensures a strong safety network for the care of the dying patient. P&EOLC in England respects these diverse aspects of human rights, but there is room for improvement particularly to ensure that elderly patients, who account for two-thirds of all who die, have adequate access to specialist and generalist P&EOLC adapted to their specific needs.

Discussion and Conclusions: Human rights legislation helps underpin Professional Codes in the provision of high quality P&EOLC. It holds health service planners and providers to account on matters of distributive justice and equality of treatment across different segments of the population. It emphasises the dignity of the human being to ensure care which protects them from neglect or degrading treatment.