What has human rights got to do with end-of-life care?

Written by: Jacqui Graves, Human Rights Lead, Sue Ryder

Published: 04/09/2017

Jacqui explains the aims behind Sue Ryder's new human rights training programme.

In our normal day-to-day lives and in the media, human rights is a term that is bandied about with very little understanding of what it actually means. In our lives as health and social care professionals, our understanding is often equally as limited. When someone is ‘safeguarded’ or a ‘best interest decision’ is made about an individual using care services, what is being safeguarded is someone’s human rights.

Yet there is a quirk in most organisations’ approach to training in that safeguarding and mental capacity are covered by mandatory training for most health and social care professionals, but human rights isn’t. The irony is that practitioners would be more confident in their decision to safeguard someone or with a best interest decision if they could effectively use their legal duty under the 1998 Human Rights Act.

Most organisations – including the ALLIANCE – attach great importance to human rights and regard it as central to their organisational values. However in everyday practice, many health and social care professionals vaguely know something about human rights but generally seem to assume that they, and their employer, must be abiding by them otherwise they’d be called out. And I’ll be honest, before I took on this role for Sue Ryder, I didn’t realise just how useful the Human Rights Act could have been in helping me make decisions and in acting in the best interests of the people I’ve provided care for in a number of roles and a range of levels of seniority.

Now that I have delivered over 15 training workshops on human rights in palliative care to over 160 professionals, including to many safeguarding and mental capacity leads, I can see the huge difference that human rights can make to practice. Everyone who goes through the course realises that the Human Rights Act is the missing link in terms of practical application of knowledge. Suddenly they can see how safeguarding, mental capacity and human rights are all pieces of the same jigsaw, and the legal framework all falls into place.

One of the reasons people find the course so helpful is that the Human Rights Act helps professionals to de-personalise decisions from their own moral and ethical beliefs, and instead, it empowers them to personalise decisions in line with what the person in their care wants. And, of course, it also provides a framework that protects them in law.

So why are health and social care professionals so scared of human rights? And why don’t they use the Human Rights Act as their ‘friend’ when making decisions?

There are a number of barriers that I’ve come across as I’ve been discussing this with participants over the last few months:

  • unfamiliar language which can be very off-putting
  • lack of knowledge regarding human rights as a basis for safeguarding, mental capacity and protection orders
  • fear of introducing legal concepts into care delivery
  • lack of understanding how knowledge of this can enhance care delivery and confidence

As health and care organisations, as we try to move away from a paternalistic approach to decision making towards a balanced, shared approach to personalised care with articulated risks, it’s important that we as health and social care professionals overcome our fears and embrace what the Human Rights Act has to offer us.

Under the Human Rights Act, everyone working in health and social care has a legal duty to respect, protect and fulfil the human rights of those in their care.

Do you understand how to meet that triple duty? Do you understand how human rights as a framework can help you make balanced and ethical decisions? If your answer is ‘no’, and your work is in any way connected to end-of-life care, you would benefit from the Sue Ryder training, ‘What Matters to Me: a human rights approach to end of life care’, which is now going to be offered in Scotland.

So if you are interested in attending or hosting a workshop in 2018, then please email humanrights@sueryder.org to register interest.

Visit the Sue Ryder website to find out more information (this link will take you away from our website).

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