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What do we mean by 'quality of life'?

During a recent discussion someone mentioned 'quality of life', but what does this actually mean? One dictionary definition states "The standard of health, comfort, and happiness experienced by an individual or group" but how can this be measured? I have a step-granddaughter with severe special needs and we have been told by complete strangers that she should not be allowed to live has she has no quality of life but what do they mean and how can they comment?


Created By on 19/10/2016

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KEITH_WL
19th Oct 2016 22:45:07
1
Thanks for voting!
Of course the right response to this is to be appalled on her behalf and yours but I will confess that my *first* response would be to give these people a very hard time indeed!

I worked with mental handicap for over thirteen years, my last job. Once the chap I was supporting was taken short and had a personal accident. We were near a local supermarket and I took him into their toilet to clean him up. In his distress he decorated the walls. The manageress was absolutely marvellous. Didn't freak out at all, closed the toilet to the public and offered the services of an employee with nursing experience.

She has been on my list of heroes ever since and I would love to have had the chance to tell this to those people.

Keith
Treehugger1
19th Oct 2016 19:58:51 (Last activity: 19th Oct 2016 20:23:16)
0
Thanks for voting!
Indeed, how dare they make comments like that about someone they don't know, I find that appalling.

There has been a lot of discussion about people's right to end their lives when they find it unbearable and I confess to agreeing with that being a basic human right.
Then when I saw this thread I was pleased to be able to post a link about a truly amazing young man who was featured on our local news today with locked in syndrome.
I will leave you to watch and decide whether he has quality of life.

http://www.itv.com/news/westcountry/2016-10-06/teenager-with-locked-in-syndrome-makes-powerful-film/
Response from jeanmark Original Poster made on 19th Oct 2016 20:23:16
Unfortunately, when you have a loved one with special needs you become accustomed to ignoring such comments. She has a rare chromosome disorder and would not understand what quality of life is but does understand love. Having nursed for 47 years I have no problem with issues questioning quality of life but it is just interesting exploring other peoples perceptions.

Having posted on the subject of Changing Places some time ago, one has to question whether having to put her on the floor of a disabled public toilet to change her nappy (she is 19) affects her quality of life but people not exposed to such indignities rarely consider such things.
ecarg
19th Oct 2016 19:58:41
2
Thanks for voting!
Why are people so judgemental I'm really sorry people said that your step-granddaughter should not be allowed to live .Quality of life is a phrase I heard often in my role as a support worker and of course it is open to individual interpretation , the difficulties arise when people speak on behalf of the person with special needs who can not verbalise their own feelings and requirements . But as you will know communication takes various forms and empathy ,experience of the person gained over the years can formulate a plan to ensure the persons life is happy, healthy and contented. It takes a team ,family. health and social care to best provide a quality of life for anybody that needs our help. People should think before they speak it might be their loved one who needs care in the future.

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