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Human rights in end of life care – it is everyone’s business

Author: Philip Ball
12 February 2018

Philip Ball is a registered nurse with over 25 years experience in palliative and end of life care. Here he writes about Sue Ryder’s recent conference on their human rights initiative for end of life care.

Sue Ryder has been supported by the Burdett Trust for Nursing to work with the British Institute of Human Rights (BIHR) to develop a human rights based approach to end of life care. By using the human rights legislation and language advocacy on behalf of those in our care is strengthened. 


Sue Ryder reminds us that “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”. And that makes human rights everyone’s business.

Last week Sue Ryder held a conference called “Let’s get it right: putting human rights at the heart of end of life care” at the Royal Society just off The Mall. It was followed by the inaugural lecture delivered by renowned human rights campaigner Peter Tatchell.

Often we are expected to be advocates for patients when decision making is required about their care and future. When faced with a person with limited or no capacity, or who wishes to make what might seem an unwise choice, human rights can take the emotion and competing interests back to what matters for the person, bringing clarity to the situation.

We heard about the success of the project so far in training a range of health and social care workers in human rights, and how to use them to influence day to day practice. Jacqui Graves, Sue Ryder lead for the Human Rights and End of Life Care  project showed how the confidence and knowledge of those who have participated so far has increased. As this is a three year project there is still time for people to sign up for the free training. I made sure I signed up the next day.

Sanchita Hosali, Acting Director of the BIHR highlighted the importance of recognising human rights and how they must be considered in end of life care. We heard examples where use of this approach made a difference to decision making around issues in end of life care. Her tips for practice included:

  • Do not  be afraid of using human rights – they are a legal duty
  • Remember human rights underpin other laws and policies, and can be used to better explain services and help to resolve issues
  • Some human rights can never be restricted; this sets useful boundaries for our work
  • Some human rights can be restricted by using the 3 stage test, is it lawful, legitimate and proportionate to make defensible decisions that balance the rights of the people involved

The BIHR have lots of resources that they are keen to distribute, including a very useful e-book.

Dr Sarah Russell, Head of Research  and Clinical Innovation at Hospice UK led us on a reflection of how the care environment can support human rights in end of life care. Sharing her experience of caring for a person with dementia Sarah helped us to consider what a safe ‘space’ for conversations means; having such spaces can help people have conversations about end of life decisions, by respecting the right to a private and family life, home and correspondence. Breaking the mould of bleak, sterile institutions and creating spaces very different from those makes opportunities for sharing thoughts, wishes and decision making that make a difference to the end of one’s life.

Lesley Goodburn then held us spellbound, in what I thought of as a ‘powerful silence’ telling us about her husband Seth and his journey from apparent wellness to being a dying man overnight. The depth and variety of their experience and how Lesley set out to articulate that to those who provided their care led to the play Homeward Bound, that has become such a valuable learning resource. The system overwhelmed them as it pursued diagnosis and treatment in the face of Seth dying. The absence of listening to Lesley and Seth meant his wish to die at home was not respected and acted upon. Lesley made a plea that we use our heads, hearts and hands as we go about our work; asking us to avoid making conversations ‘difficult’; instead to be brave, courageous, honest and open and in that way we would be respecting human rights in a way that was denied them.

The conference ended at that point, leaving us with reminders of the importance of listening and having confidence in our duty to respect human rights, particularly in end of life care.

After a networking break Peter Tatchell delivered the Sue Ryder Inaugural Lecture, “Let’s get it right: humanity at the end of life”. Peter led us through the background of experience the LBGT community has been through, reminding us that much legislation in the UK was only repealed in the last decade or so whilst despite having laws against discrimination and violence many LGBT people still experience violence and discrimination.

A particular point is that for many LGBT people in their 80s for most of their lives  they have lived outside the law; forced to deny or at least keep hidden relationships that have lasted them 50 years or more.  They are more likely to die single, and to face discrimination by families who do not want to acknowledge their existence when a partner dies. Peter made it clear that while he is aware of many examples of good end of life care; there is more to be done in terms of supporting LGBT people at the end of life and support in bereavement. Making links with, and consulting local LGBT support groups is one way to advance this. Peter’s final message was that we need to build coalitions for equality and human rights; this will not only help the LGBT community, it will benefit everyone. And that reminds me, human rights are everyone’s business.

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