Attitudes towards end of life issues among people with MND

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MB100

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Hello,

I am a junior doctor in London with an interest in neurology.

In collaboration with several consultant neurologists at Barts and The London Trust, I have written a survey about attitudes towards end of life issues among people with MND/ALS.

It covers some sensitive issues, such as advance decisions, assisted suicide, voluntary euthanasia and mood / social circumstances. The aims of the project are to enhance the quality of our healthcare services and to inform the public debate.

I would be extremely grateful for any contributions from people with MND. Alternatively, carers or relatives can answer on behalf of people with MND.

The link is:

https://www.surveymonkey.com/s/mndsurvey-end-of-life-issues

Thank you very much indeed,

Morag Brothwell
 

Tokahfang

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I just wanted to say I appreciated you remembering PLS's existence on your "which MND" dropbox.
 
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Madison1943

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I tried to answer the questions, but they were repetitive and eventually my hand and arm got tired. I quit halfway through. You have to remember that we are ALS patients. Make the surveys SHORT.
 

MB100

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Hi there,

We did try and make it as short as possible - we aimed at 5 - 10 minutes. Thank you very much for giving it a go!

Morag
 

Marjorie R. Wilcox

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A couple of comments I would like to make. There were some questions where my choice of answer wasn't there.
Suicide would not be a part of my doctor's involvement. It would be up to me when and how to do it. Because I don't breathe
when I sleep, I can just take off the bipap and go to sleep and likely won't wake up. My wife is drastically allergic to Ibuprofin so if it were her she would just take 1000mg (a normal dosage) and her heart would stop. Convenient. We do approve of those who cannot care at all
for themselves, to be able to end it all if life means nothing. I would definately take the feeding tube, but am unsure about the trache.
We are religious and know that suicide is NOT the unpardonable sin, according to scriptures Blaspheming God is the one. If you know Christ as your Savior, you will still be Heaven bound.
 

MB100

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Thank you very much for your comments. They will all be taken into consideration.

We would love to collect more responses so thank you to those who can spare the time to answer the survey.

Best wishes, Morag
 

Chris_b

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completed survey
 

MB100

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Thank you for all your responses. I hope to continue to collect responses so that the results can most accurately reflect the attitudes and feelings of people with MND.

BW Morag
 

Karvorka

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Done ... I believe we will be introducing assisted suicide before the uk and the us, one of our territories actually did pass laws in the late 90's but the federal government overturned them; but with our new federal dynamic it's only a matter of time
 
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