#16 The views of Disabled People on Advance Care Planning. What we can learn from research by scholar activist Gill Loomes-Quinn
18.04.2022
#16 The views of Disabled People on Advance Care Planning. What we can learn from research by scholar activist Gill Loomes-Quinn
In this episode I talk with Gill Loomes-Quinn and learn about her research into the views of disabled people on Advance Care Planning. Gill describes her research and we talk about what we can learn and apply from her work.
Key messages from Gill
Catalysts for Gill’s work came from the Paul Briggs case and the discussion around clinically assisted nutrition and hydration leading to a greater awareness of Advance Decisions. Gill also expresses the controversy around the film Me Before You and the negative reflections on quality of life for disabled people presented in the film.
Gill’s work focuses specifically on the views of disabled people around Advance Care Planning looking at Advance Decisions to Refuse Treatment (ADRT) and Lasting Power of Attorney (LPA), particularly Health and Welfare LPAs.
Gill’s research findings echoed the lack of understanding around Advance Care Planning.
The disabled population echos the general population in the numbers completing Advance Care Planning
Lack of knowledge was cited as a reason for not planning ahead, along with superstition around talking about death and dying and a belief it was too early to plan.
The anxiety expressed by some people that they could be viewed as a burden, contrasted with other views that LPAs were a natural extension of supportive advocacy.
The concern about judgements on quality of life for best interests decisions felt by disabled people.
The importance of trust in the disabled community in supporting each other with Advance Care Planning, this was countered with views on equity i.e. disabled people should not need a specific access to Advance Care Planning facilities.
Disabled people should be able to go to any group or service that a non disabled person could access but should also be able to come together with other disabled people and feel safe.
Resource
Read more about the Court of Protection – Paul Briggs case on withdrawal of life-prolonging treatment
Find out more about Gill and her work here
Learn more about the Mental Capacity Act
Read more about the study Gill discusses Increasing understanding and uptake of Advance Decisions in Wales by Professor Jenny Kitzinger and Professor Celia Kitzinger
Find out about Advance Decisions to Refuse Treatment ADRT
Find out about the Open Justice Court of Protection, see link for details and case blogs openjusticecourtofprotection.org
Gill Loomes-Quinn is founding co-director (along with Celia Kitzinger) of the Open Justice Court of Protection Project. She is a socio-legal scholar-activist with a background in community advocacy. Her research explores how practices relating to the Mental Capacity Act 2005 engage with and impact on the 'voice' of disabled people - including an analysis of the views of disabled disability rights activists on advance care planning. Alongside her academic research, Gill is a convener of the Participatory Autism Research Collective (PARC). She tweets @GillLoomesQuinn.
Connect with Gill on Twitter @GillLoomesQuinn
Find out more about my Bespoke Consultancy
If you’d like to find out more about my work contact me.
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Thanks to all my guests for working with me to share their knowledge, experience and stories about Advance Care Planning. I hope you enjoyed listening and have insights to take away; I love hearing your reflections on the series and look forward to reviews on Spotify where you can also subscribe to the series.
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Podcast edited by Martin Whiskin.