Sharing learnings from What Matters to Me: A Human Rights Approach to End of Life Care

Jacqui Graves, Human Rights Lead at Sue Ryder shares her experience and learnings of implementing the training programme to date.

A What Matters to Me training workshop

What Matters to Me: a human rights approach to end of life care

Since March 2017, Sue Ryder has been delivering a comprehensive training programme, “What Matters to Me”, designed by Sue Ryder for nursing and social care practitioners working in end of life care across the UK, thanks to funding from the Burdett Trust for Nursing, where this original blog post was published.

The training programme, in collaboration with the British Institute of Human Rights, uses a human rights approach to address the challenges associated with shared and ethical decision-making at end of life to ensure that the voice of those in our care is really listened to and their decisions respected and protected – even when we believe those decisions to be ‘unwise’. This is the real ethos behind person-centred and person-led care.

However, in implementing the programme it’s become clear that there is great confusion around what human rights in practice actually means.

Why is a human rights approach so important?

Human rights are based on the principles of fairness, respect, equality, dignity and autonomy and belong to everyone equally – whether patients or practitioners.

Most health and social care organisations attach great importance to these principles and regard them as central to their organisational values. If you ask any nurse if they treat those in their care with dignity and respect the universal answer will be, ‘of course, that goes without saying’.

However, what does treating someone with dignity and respect look like? What are the behaviours that would demonstrate a nurse working in that way? How do we make this a reality in every interaction we have with those in our care, rather than just lip service?

Early analysis and results

Early analysis from the first six months of the training programme was published in the European Journal of Palliative Care in 2018*.

In order to evaluate the impact of the training programme, practitioners were asked to complete a pre and post workshop questionnaire on their knowledge of human rights and their confidence in using human rights in practice.

Questionnaires were completed online via an e-mailed link with data stored in a database. Pre and post workshop questionnaires were matched and subsequently anonymised so that responses could be compared, and any change in the self-assessed ratings measured.

Since then, we have analysed two years worth of data and been able to demonstrate that from 474 matched pre and 2-week post workshop questionnaires: 90% of attendees rated their knowledge about human rights higher following training and rated their confidence to use human rights in practice as 95% higher - overwhelmingly positive results.

The results from the 109 six months post training questionnaires analysed so far, results showed 73% believed the training improved their ability to better deliver person-centred care, indicating exactly how fundamental an understanding of human rights is in providing care that centres on a person’s needs and what matters to them. 

The final evaluation will be completed and published by the end of 2019.

"Personally, I think it is essential for practitioners to understand how human rights is a key factor in helping patients and families make difficult decisions at end of life and this session really helped me to understand this."

Nurse Education Lead

One of the reasons nurses find the training so helpful is that the UK Human Rights Act (1998) helps them to move away from decision-making based on what they would want for themselves or their family and instead 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 under UK law.

When asked for feedback about the course, one of the Dementia Together, Level 2 Navigator/Helpline Operator's said:

“I am happy that I now have a better understanding of our Human Rights and will use the booklet as a point of reference if I ever have any queries in the future. I must say that I am already starting to think about things in a slightly different way.”

As we move away from the historical parental approach to decision making, towards a balanced, shared approach to personalised care with its risks articulated, it’s important that we, as nurses, embrace the principles of human rights to ‘do the right thing’ for those in our care.

This blog originally appeared on The Burdett Trust website in June 2019.

References

* ‘Human Rights in End of Life Care: implementation and early evaluation of the training programme,’ by Jacqui Graves, Tracey Shields and Caroline Belchamber is published in the European Journal of Palliative Care, 2018; 25(1).

Human Rights Lead Jacqui Graves

Human Rights Lead

Jacqui Graves

Jacqui is a Registered General Nurse with 33 years' experience. At Sue Ryder, she leads on our 'What Matters to Me: a human rights approach to end of life care' training programme.