Decision making at the End of life for people with PMLD

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Decision making at the End of life for people with PMLD


I am a third year student at Bristol University and I am currently working towards the completion of a dissertation for an MSc in Inclusive Theory and Practice.

The working title of my dissertation is - It’s never too late to make it personal: Decision making at the End of life for people with profound and multiple learning disabilities (PMLD).

This is a wider appeal for grey literature as my dissertation will be a desk based study. By grey literature I am referring to information already made informally public. Examples of grey literature in this case may include; working papers from research groups or committees, white papers, preprints, DVD’s, websites, tools that are used in local settings, local projects and presentations from events.

I need examples that highlight–

- Practices, approaches, projects and tools currently used to include people with all/any learning disabilities in End of Life decisions.

- Practices, approaches, projects and tools that exist for involving people with PMLD generally in any decision making or topic.

If you are replying to this request via a forum - As a forum user you will be aware that any reply you send may be seen by other people on the forum and adhere to the usual forum good practice of not using the names of other people in your replies, unless previous informed consent has been sought.

Please also forward this request to people who you feel may be able to help and let me know if there are any other forums or if you have any suggestions of where I could post this request.

If you wish to send a reply directly to me, my University email is

I am not asking for your own personal stories about supporting someone at the End of Life. As this is a desk based study, I have not sought ethical approval for collecting primary personal accounts. Unless personal stories have already been made public as part of the grey literature, they will not be able to be included in my dissertation.

If you do you need some support regarding a personal issue you can -

- Call Mencap's Learning Disability Helpline on 0808 808 1111.
- Contact your local Community Learning Disabilities Team. You can find out the contact details for your local team from your council or Primary Care Trust.
- Visit

I will post my finished dissertation to this forum for your information, once I have approval from the University to do so.

I will be collecting information until the 4th May 2013.

Thank you in advance for your help,

Kate Burns.

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