Human Rights in End-of-Life Care: Implementation and early evaluation of the training programme

Jacqui Graves, Human Rights Lead, Sue Ryder, UK, explains the background to her longer article, which is published in the January/February 2018 issue of the European Journal of Palliative Care.

Jacqui Graves

In our normal day-to-day lives and in the European and UK media, ‘human rights’ is a term used with very little understanding of what it actually means. In our roles as health and social care practitioners, our understanding is often equally as limited. Yet the Universal Declaration of Human Rights has been in place since 1948 and the European Convention of Human Rights since 1950. Subsequently, many European countries have developed their own domestic human rights treaties. In the UK, our treaty is the Human Rights Act 1998. 3

Are you aware of your own country’s human rights law and how it relates to end of life care practice? 


What are Human Rights?

Human rights are based on the shared values of fairness, respect, equality, dignity and autonomy and belong to everyone equally.

Most health and social care organisations attach great importance to human rights and regard it as central to their organisational values. However, in everyday practice, many health and social care practitioners vaguely know something about human rights, but generally seem to assume that they, and their employer, must be abiding by them, otherwise they would have been in front of a court of law.

Do Human Rights have a place in training? 

Sue Ryder developed a training programme that uses a human rights approach to address the challenges associated with shared and ethical decision-making in end-of-life care. Analysis from the first six months of the training programme has been shared in the European Journal of Palliative Care.

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. The questionnaire was adapted from a similar evaluation commissioned by Scottish Human Rights Commission (2011) 4  and we added questions from the General Self-Efficacy Scale. 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. Eighty-six participants pre- and post-workshop were matched, giving an overall response rate of 54 per cent.

Results showed that knowledge of professionals had improved by 56 per cent and confidence had improved from 61 per cent.  Overwhelmingly positive early results.

In addition, practitioners had the opportunity to provide qualitative feedback. Comments from practitioners illustrated further the value of the workshops, for example:

“I thought it was an excellent study day and really opened my eyes to a subject I had no knowledge of. 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. It also allowed me to reflect on situations I had come across in the past, if we had the knowledge of human rights would we have made the same decisions?” – Education Lead

One of the reasons practitioners find the training so helpful is that the UK Human Rights Act (1998) helps them to de-personalise decisions from their own moral and ethical beliefs 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. 

Do you use your own country’s human rights law as part of end-of-life care training?

As we try to move away from a parental 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 practitioners, embrace the principles that all the International, European and National Human Rights Treaties have to offer us. Please email me for more information on Human Rights Training or access:


  1. United Nations. Universal Declaration of Human Rights, 1948.
  2. Council of Europe. European Convention on Human Rights. November 1950
  3. UK Government. Human Rights Act, 1998.
  4. Scottish Human Rights Commission. Evaluation of Care About Rights. GEN, The University of Bedfordshire and Queen Margaret University. October 2011.
  5. Schwarzer, R., & Jerusalem, M. (1995). Generalized Self-Efficacy scale. In J. Weinman, S. Wright, & M. Johnston, Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35-37). Windsor, UK: NFER-NELSON. 


Read the full article in the European Journal of Palliative Care
This post relates to Human Rights in End of Life Care: implementation and early evaluation of the training programme,’ by Jacqui Graves, Tracey Shields and Caroline Belchamber, published in the European Journal of Palliative Care, 2018; 25 (1).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

This entry was posted in ADVOCACY & POLICY, EAPC-LINKED JOURNALS, European Journal of Palliative Care and tagged . Bookmark the permalink.

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