A human rights approach to end of life care

Sue Ryder has launched a new approach to end of life care using the Human Rights’ Act (HRA). The work has provided a practical tool to help practitioners caring for people at the end of their lives make some, often difficult, decisions.

As experts in end of life care, we have worked closely with the British Institute of Human Rights (BIHR) to create the new resource for health professionals entitled A Human Rights' Approach to End of Life Care, which is available to download from the BIHR and our websites.

This important new resource will help deliver good-quality care that is person centred, accountable, and balances the needs of individuals against the needs of others and the wider community.

Challenging misconceptions and driving best practice

Sue Hogston, Chief Nurse at Sue Ryder, said: "I believe the guide is going to have a big impact – I think concentrating on what is important to individuals and balancing this with a person's human rights will assist in ensuring the cultural change required for good end of life care occurs.

"Because of some people’s misconceptions of the HRA, we want to deliver it with a training programme," she continued.

"The aim of the training will be to increase knowledge, confidence and capacity for nursing, medical and care staff and others to be able to use the human rights’ approach to end of life care.

"Lack of confidence around delivering end of life care is a recurrent problem in many acute trusts and complaints regarding poor experience of end of life care continue to occur. We hope this new resource will assist in addressing this," concluded Sue.

The programme will use established case law to facilitate discussion and provide a pragmatic way of putting theory into practice.

"Human rights are at the heart of end of life care"

Evaluation conducted following the training has already shown some excellent results. 100% of respondents said they had above average to excellent knowledge following the training. At the start of training, 91% said  that human rights were relevant or very relevant in some areas of their work; this increased to 100% by the end of the course.

"During the workshop I learned that human rights are at the heart of the policy and practice that support us in delivering person centred care at end of life," said Dr Alison Talbot, Associate Specialist at Sue Ryder Duchess of Kent Hospice, who attended the course. "Without knowledge of the Act, how can we exercise professional judgement and fulfil our duties to respect and protect human rights, and fulfil the guidelines and procedures set out by our organisations?

"The practitioner’s guide provides key information of practical assistance when making difficult decisions that may impact on the human rights of the people we work with and for, and helps to ensure best practice," Dr Talbot continued. "I have found it user-friendly, written in plain English and of direct relevance to day-to-day clinical practice. This guide will be a useful tool for everyone working in palliative care in the years ahead as we all strive to provide ‘exceptional care at the end of life’.

"My newly acquired knowledge has provided me with a new perspective on provision of holistic care, and I wholeheartedly encourage clinicians to take advantage of the training initiative that will be offered in the months ahead," she asserted.

Download the guide now

This new and innovative resource outlining a human rights approach to end of life/palliative care is in the form of an interactive guide. It is part of a series that also includes resources for professionals not involved in specialist palliative care, with partners including the Royal College of Nursing and NHS employers.

The guide and training are being delivered to nurses and other health professionals thanks to a grant from the Burdett Trust for Nursing and will be available in the new year.

Read and download A Human Rights' Approach to End of Life Care