To think 'incompatible with life' is unacceptable

[TheDisillusionedAnarchist]

Another day, another thread on here about screening. Another person describing certain disabilities as 'incompatible with life'.

Surely this term is disablist and unacceptable and needs to go. Really is it okay to describe people as 'incompatible with life' . What does it even mean?

Babies with conditions like trisomy 13 or 18 or anencephaly are very much alive, even if they do not survive to birth , they matter to the people who care about them. Their parents and family and some do survive sometimes for 20 and 30 years. Yes they have severe disabilities, yes they require support to live but they are alive.

Today my daughter with trisomy 18 celebrates her first month birthday. Aibu to hope that today might be the last time I read 'incompatible with life' to describe her on here.

Ah, that's a very interesting cross post.

Well whatever it is that is making you consider it 'defective'.

I havent had chance to read every single post but just to say I work with severe anorexia and we relatively often work with people with a bmi that 'isn't compatible with life', now actually the majority I have worked with in this category do live and go on to live (obviously past that crisis I can't say once they leave our care) so whether medicine and its advances have made the condition or circumstances now 'compatible with life' or whther its used to convey the seriousness of the situation i'm not sure. Either way it's clearly horrendous to hear it in relation to a loved one.
wishing you and your beautiful daughter much love op.
x

What do you think about specific clinical diagnoses that involves the word 'defect'?

e.g. atrial septal defect (to stick with the heart theme)

And what do you say if the condition really is "incompatible with life"?

OP I have read the document you put together for the ethics committee.
I found it informative, extremely well thought out and.... Well scary.
Scary to think that in some cases, the medical community will do anything to save a patient (incl sometimes against their wishes to not be resuscitated) and then in some cases, like with your dd, they will be happy to not 'actively treat'.
I can't imagine the heartache it must have been to put all that together whilst pregnant with your dd and fearing an awful outcome.

I think this document actually lie the issue about 'incompatible with life' very well.
If incompatible with life means death for sure, then why treating a patient is a good question. Or rather why treat some patients and not others?
And how can you say that a condition is 'incompatible with life' when some patients actually carry on living what is a fulfilling life? (See the comment if pp regarding people with anorexia too).

I am at the impact of that sort of pre conceived ideas on what sort of txt you receive.
And I suspect this is not the only area (I know being old is another reason for not getting as good treatment...).

I teach prospective clinicians about genetics and genetic disorders. Maybe there are some linguistic tricks I can try and implant.

I wonder if you might need different linguistic tricks for, well, different types of people. I know personally I'd much rather hear the precise scientific language than any gentler phrasing in a serious medical situation.

OP, I've been reading and thinking and it seems to me that your biggest concern is that when applied to the condition your lovely daughter has, then the phrase 'incompatible with life' is dangerous and problematic because it just isn't true in all cases. But is the problem the phrase itself or the medical perception of trisomy 13/18? (As in, could it be an acceptable term in cases where it is accurate?)

I do completely see your point r.e. the huge issues it can cause when it reflects an (incorrect) view of a child's chances and this affects the kind of treatment they are offered.

Hope the op went okay. X