The importance of human rights in end of life care

What is a human rights approach in end of life care, and why is it important? Jacqui Graves, Human Rights Lead at Sue Ryder, tells us how the coronavirus pandemic has highlighted the importance of respecting the individual rights of patients at the end of life.

As Human Rights Lead, Jacqui supports Sue Ryder’s staff in complex situations such as those relating to mental capacity and safeguarding.  She also develops and delivers training for people working in end of life care across the UK, that uses human rights as a framework for ethical decision-making and delivering personalised care.

The training builds knowledge using the UK Human Rights Act 1998 as its foundation, with landmark case law and case studies to show how the act can be applied to real-life practice. 

“Human rights are based on the shared values of fairness, respect, equality, dignity and autonomy” Jacqui says.  “A human rights based approach is about empowering people to know their own rights but also the rights of their patients. This increases the accountability of the individuals and institutions that are responsible for respecting, protecting and fulfilling rights, while providing a framework for balancing different interests and needs.”

Using this approach also means that caregivers have greater opportunities to participate in shaping decisions that impact on human rights. “It ensures that the principles of human rights are integrated into policy making as well as the day-to-day running of organisations and the decisions they make” she says.

Barriers to human rights

Jacqui says that while there is a consensus that everyone has the right to palliative or end of life care, this does not always translate into end of life care that respects an individual’s rights. “Some people in the UK are still experiencing poor end of life care, which has been highlighted by complaints and in extreme cases, public inquiries.

“The feedback from course participants shows that while the training is used in practice, there are other barriers to taking forward a rights-based approach that cannot be addressed by training alone, and additional action is needed that addresses these barriers.”

Last year Sue Ryder decided to look at some of these broader systemic issues after commissioning a review that found that “there is no conclusive evidence to indicate that a national human rights culture in UK health and social care exists.”

The review found that the current political climate in the UK isn’t aiding progress in this area. “We identified three areas for development if the human rights approach is to be truly embedded in end of life care” Jacqui says. These are organisational culture of health and social care; the ability for health and social care workers to balance safeguarding and human rights principles; and a multidisciplinary workforce.

The impact of Covid-19

Additionally the coronavirus pandemic has raised some human rights issues she says, particularly around the blanket application of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) in some care settings, restrictions on visiting, and restrictions on freedom of movement.  “National Guidelines are important but equally important is how those guidelines are implemented to balance risk proportionately, and avoid making decisions where 'one size fits all'.

“As we move into and out of national and local lockdowns it is important to keep challenging ourselves to question whether the decisions we are making are necessary and proportionate.

“The pandemic has pushed palliative and end of life care to the forefront of many people’s minds. Therefore it is incredibly important that as a society, we do all that we can to ensure people have the best experience possible of end of life care, even in challenging circumstances.”