Caroline Belchamber, Professional Lead for Education at Sue Ryder and Visiting Fellow at Bournemouth University, UK, explores a human rights approach to end of life care
Are we delivering effective end of life care?
Lack of confidence in delivering effective end of life care is a recurrent problem in United Kingdom (UK) hospitals. The Dying Matters Coalition set up by the National Council for Palliative Care reports that, ‘more than half of the complaints referred to the National Health Service Ombudsman, concern end of life care.’ This is confirmed by a recent report: On the brink: the future of end of life care, which states that poor end of life care has been experienced by around 48,000 people in the last year.
What can we do to improve end of life care?
We need to support and empower practitioners delivering this care and that requires a new approach. At Sue Ryder, we believe that this approach should be based on human rights. Sue Ryder provides hospice and neurological care in the UK. We treat and care for more conditions than any other UK charity and campaign to improve the lives of people living with these conditions. As part of our mission to provide personalised and compassionate care, Sue Ryder is leading a pioneering education initiative to embed a human rights approach. Working with the British Institute of Human Rights we have developed a practical guide to end of life care and human rights, which addresses the challenges associated with ethical decision making and how the Human Rights Act (1998) can be a valuable tool for navigating these challenges.
The Care Quality Commission and the Royal College of Nursing have incorporated a human rights approach to regulate services and care assessments as a response to the failings of the Liverpool Care Pathway and the learnings from the Francis Inquiry, which called for a patient-centred focus to frame discussions in human rights. Human rights operate in the UK under international and national law and are legally enforceable, so health and social care providers have a duty to meet patients’ entitlements (RCN, 2017). The FREDA principles (Fairness, Respect, Equality, Dignity and Autonomy) are considered to underpin all international human rights treaties. The Human Rights Act (1998) takes 16 of its rights directly from the European Convention on Human Rights and can aid ethical decision making, affect change, ensuring compassion and dignity are at the heart of end of life care. Using a human rights framework could effectively guarantee high- quality personalised care. Immediate accountability and longer-term change should therefore be shaped by human rights, including equal access to palliative care as a basic human right to enable people to live the final stages of their lives with dignity (www.hrw.org).
What do we mean by dignity and human rights?
Human dignity is an underlying principle of the Universal Declaration of Human Rights (UDHR) providing a mutual standard of attainment, where human rights and the promotion and protection of health are inextricably linked (WHO, 2002). A human rights approach is essential both in developing health policies and services and in individual practice (RCN, 2017) However, human dignity as an underlying principle is controversial with different religious and philosophical understandings combined to provide a globally accepted definition. This has led to the ambiguity of the concepts meaning. An understanding of the interpretation of human dignity is required to reduce conflict around end of life care and euthanasia: End of life care definition of human dignity is from a religious and interpersonal viewpoint, whereas euthanasia is defined from a philosophical individualistic viewpoint. Personal autonomy, a key aspect of human dignity, is provided as justification for euthanasia and interpreted in an individualistic manner. However, the UDHR reminds us that human beings possess an inherent dignity, which is a human and civil right and should be framed in an interpersonal, social and community manner (Loughlin, 2016).
How can this be translated into practice?
Through the Sue Ryder workshops and using the practitioners guide we can unpick the human rights language, embed key principles and develop understanding and confidence, ensuring sustainable improvements in care to meet the needs of people at the end of life. Evaluation of our pilot workshops demonstrates that practitioners benefit from support to embed this approach into practice:
“Although this was something I was aware of, the session has given me the tools to engage with Human Rights effectively.”
A human rights approach is unique in its premise of challenging professional boundaries and empowering practitioners to apply a universal and fundamentally personalised framework, with the potential to transform end of life care in all settings preventing poor end of life care.
Please email Jacqui Graves, Palliative Care Service Educator for more information on ‘What matters to me: a human rights approach to end of life care’.
To find out more …
Department of Health (DOH), 1998. Human Rights Act. [Accessed March 2017].
Loughlin, J. 2016. Human Dignity: the foundation of human rights and religious freedom. Universidad de Navarra. ISSN:1139-0107; DOI: 10.15581/001.19.313-343.
Royal College of Nursing (RCN), 2017. RCN: Health Care and Human Rights. [Accessed March 2017].
World Health Organization (WHO), 2002. 25 Questions and Answers on Health and Human Rights, Geneva: WHO. [Accessed March 2017]