Our Human Rights in End of Life Care Conference: a retrospective

Sue Ryder hosted a free conference on human rights in end of life care on Thursday 27th June 2019 in London. The full-day event built on our first human rights conference in February 2018, exploring further how applying a human rights approach to end of life care practice can help deliver person-centred and compassionate care.

A panel comprising human rights experts (left to right) Tor Butler-Cole QC, Richard Harding, Sanchita Hosali and Jacqui Graves answered questions.
A panel comprising human rights experts (left to right) Tor Butler-Cole QC, Richard Harding, Sanchita Hosali and Jacqui Graves answered questions.
Heidi Travis opening human rights conference 2019
Sue Ryder chief executive Heidi Travis welcomed delegates to the event.
Sanchita Hosali speaking at human rights conference 2019
Sanchita Hosali, CEO from the British Institute of Human Rights, was one of our keynote speakers.
Tor Butler-Cole QC and Richard Harding at human rights conference 2019
Other speakers included Tor Butler-Cole QC and Professor Richard Harding of the Cecily Saunders Institute.
Human rights trainer Rosemary Doherty speaking at human rights conference 2019
Practitioners from across the healthcare spectrum - including St George's NHS Trust Education Lead Rosemary Doherty - shared their experience of taking and delivering our Sue Ryder 'What Matters to Me: a human rights approach to end of life care' training.
Audience with their hands in the air
Speaker Professor Jenny Kitzinger engaged the audience by asking attendees questions such as whether they would want an Advance Decision to Refuse Treatment in place in different healthcare scenarios.
Busy stands at the human rights conference 2019
Delegates from across the UK attended the conference.

On 27th June, Heidi Travis, CEO at Sue Ryder, welcomed over 80 delegates to our second Human Rights in End of Life Care Conference. 

Delegates came from all over the UK, including Scotland and Wales, and from all professions; over 40% of attendees were nurses. 

Results of our human rights in end of life care training "overwhelmingly positive"

Our Human Rights Lead Jacqui Graves started the day by presenting our early analysis of two years of data from our training programme ‘What Matters to Me: a human rights approach to end of life care.

We were able to demonstrate from 474 matched questionnaires that 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 final evaluation will be completed by the end of 2019, with publications in peer review journals and submissions for conference presentations to follow.

Changing the patient-practitioner exchange from transactional to meaningful

Next, we heard from our speakers.

Sanchita Hosali, CEO from the British Institute of Human Rights, started with this quote from Mary Robinson, former UN High Commissioner for Human Rights: “Human rights are inscribed in the hearts of people; they were there long before lawmakers drafted their first proclamations.”

She shared her insights into how a human rights approach is about making decisions that are rights based, not risk based, and gave real examples of the difference that this has made for those in care. It changes an exchange between a patient and professional from transactional – Patient: “You are being unfair to me” / Professional: “No I’m not”– to one of meaningful dialogue between two human beings.

A human rights lawyer's perspective

We then heard from Tor Butler-Cole QC, who shared insight into health and end of life care-related legal cases that involved human rights, and how judges interpreted the Human Rights Act alongside other laws in each example.

Following the Charlie Gard case, where the test applied by the Appeal Court was one of ‘significant harm’, the new Access to Palliative Care Bill will stop parents being able to seek treatment elsewhere where treatment would likely cause significant harm.

Tor also posed the question: “How do we keep abreast of key landmark legal cases in end of life care and health more generally?” Not easy for busy clinicians.

Only 10% of people in the world receive the end of life care they need

Professor Richard Harding of the Cecily Saunders Institute showed the stark reality of the lack of access to palliative care globally with only 10% of the 20 million people annually who require end of life care receiving it. Only 58% of countries have a service and in Pakistan there is one palliative care service for 90 million people.

Richard also said we have lots to learn from lower and middle-income countries and other cultures, particularly those from other cultures who are under our care here in the UK.

Learnings from our human rights training

After lunch we had the ‘speed dating’ equivalent of presentations – four 6-minute talks from human rights trainers about their experience, what they have learned from delivering training and the difference they are seeing in practice.

Speakers included our very own Kath Keogh and Jude Scott, who are Education Leads at a Sue Ryder hospice and neurological care centre. 

Polly's story

Lastly, we had a very emotive presentation from Professor Jenny Kitzinger about her sister Polly.

Polly did not have an Advance Decision to Refuse Treatment in place when she had a car crash. Polly has since been left in a health state that she would deem wholly unacceptable had she capacity to express her wishes. She is not dependent on clinically assisted hydration and nutrition or ventilation and therefore there is no treatment to refuse that would allow Polly’s life to come to a natural earlier end. This did not reflect the values that Polly held throughout her life leading up to the accident.

Feedback from the day

Feedback from delegates showed that 74% rated the conference as 'excellent', with a further 18% rating it as ‘good’. Here are some of the comments from delegates:

“Inspiration for promoting culture and system change in my own health economy."

 

“Jenny Kitzinger’s presentation had a very emotional effect on me – made me think about doing an ADRT – very powerful."

 

“Got me to think critically about human rights at home as well as at work. It’s helped to embed previous learning."

 

“Informative and current information with mix of theory and practice – loved global perspective too!”

 

“Thought provoking and gave me thoughts about future training in my organisation."

For any further information about the conference or to get involved next year, please contact Jacqui Graves, Sue Ryder's Human Rights Lead, by emailing jacqueline.graves@sueryder.org.