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A human rights-based approach to end of life care

Author: Leila Hawkins
30 March 2017

A new training course encouraging health professionals and others providing care for people facing the end of life to adopt a human rights-based approach is launched today by Sue Ryder.

‘What Matters to Me’ draws directly from the Human Rights Act, using it as a practical tool to support ethical and shared decision-making at the end of life. It consists of a series of workshops that will be delivered by Jacqui Graves, Palliative Care Service Educator at Sue Ryder. 

The workshops will have small groups to allow for interaction, so participants can explore real life scenarios in depth. The purpose is to encourage debate, increase awareness of ethical issues, and make sure dignity and compassion are embedded into providing care.

They are entirely free to attend, and are open to both the registered workforce such as doctors, nurses, social workers and other healthcare professionals, as well as others who come into regular contact with someone receiving end of life or palliative care. 

In the autumn the “Train the Trainer” workshops will go live, for individuals who have already completed the registered workforce workshop. These will enable trainers to run the training in their own workplaces and help embed a sustainable legacy at the end of the grant.

The concept stemmed from a guide published by the British Institute of Human Rights (BIHR) and co-created with Sue Ryder, called “End of life care and human rights: a practitioner’s guide” in July 2016. This guide, along with the phasing out of the Liverpool Care Pathway after the allegations of patients being placed on it without the knowledge or consent of family or carers, and general misconceptions of the Human Rights Act, led them to deliver it as a training programme.

On what Jacqui hopes ‘What Matters to Me’ will achieve, she says: 

“The aim of the training will be to increase knowledge and confidence for practitioners to be able to use the human rights approach to end of life care.  Lack of confidence around delivering end of life care is a recurrent problem and complaints regarding poor experience of end of life care continue to occur.  We hope this new training will address this.”

"I believe this is going to have a huge impact and that we can enable organisational and cultural change from this approach, but most importantly ensure personalisation at end of life for those we care for."

Hospice UK are among the champions supporting the training. The Burdett Trust for Nursing have awarded Sue Ryder funds to deliver this training for three years, and there is a target figure of 1710 people to be trained in that time.

Jacqui will be delivering workshops throughout the rest of 2017 across the UK.  For further information, please go to Sue Ryder.

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