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.

Just seen your next post. That's terrible.

I'm not being confrontational, BTW (and I've acknowledged upthread that it might not be appropriate in every context to use medicalese).

Ah that's a good question, and I think I find the term defect acceptable when talking about an organ (such as heart defect) but when speaking about a visible part of the body (such as a limb) it is quite an offensive term.

I prefer the term 'difference' so in my DDs case she had a limb difference. Defect literally means an imperfection (according to the dictionary!) and I for one will not be allowing anyone to suggest to my DD she is anything other than 100% perfection!

Sorry that should say she has a limb difference, not had! Although hopefully one day her legs will be equal lengths and then we will be able to say "had a limb difference"

Treasure every moment with beautiful Rumer, each one is a precious gift. She is a little beauty.

Ah that's a good question, and I think I find the term defect acceptable when talking about an organ (such as heart defect) but when speaking about a visible part of the body (such as a limb) it is quite an offensive term

So I'm just conversing here, if I inadvertently stray into offensive or annoying (or just badgering), let me know...

Why is describing a defect in a body part that is visible different than using the word to describe a hidden body part? From a biology/medical POV, a limb is a heart is an eye is any other body part. And I suspect there might be offensiveness in using the word 'defect' in reference to the hidden brain. I would guess that you are thinking of how the person themself feels when they hear something very visible being referred to in the context of 'defect'? It's less obvious to be shy or embarrased about a heart defect than a limb defect/difference.

Using the word 'difference' doesn't convey the same information as 'defect', IMO. The first is a broad descriptor; the latter would be assumed to be a biological cause. Of course, choosing between the two depends on what information you are trying to convey and to whom.

Of course your daughter is perfect. I don't think perfection necessarily precludes physical imperfection, just as a general idea --

She's beautiful, OP. Good luck for tomorrow x

Even as I was writing my previous post I was questioning why I felt that way, and I think you are quite right that in reality there is little difference to the defect (or difference ) being visible or non visible, but how would you feel if your child had say a cleft lip and people described their face as defective? And how would they feel to hear that?

(To be clear I would never suggest that's what people would say about a cleft lip - I'm just giving an example!!!)

but how would you feel if your child had say a cleft lip and people described their face as defective? And how would they feel to hear that?
I completely get this. I think there is a difference between defining a specific issue in terms of 'defect' e.g. palatal defect (cleft palate), and using the word to describe a larger part of the person than necessary. I guess it feeds into the very right concept that a person isn't defined by a disability.

I sometimes think that clinicians are in a difficult position (although obviosuly it's not as difficult as that of the patient/parents of patient). They have a duty to be sensitive, but also to be accurate. And when you don't know whether the people you're talking to will accept words X, Y or Z, it's hard.

But of course, nobody should be saying that someone with a cleft lip has a 'defective face'. That doesn't convey any information at all. I do use the phrase 'facial defects' when specifying several specific defects that occur together, but I'm not patient-facing. I also use the word 'dysmorphia/dysmorphic', which I've seen objected to here.

Interestingly, in my work, I've published patient cases and those cases are obviously written in clinical language. I've had patients request copies of the papers (not directly, they are anonymised to me), as it's often difficult to access them outside of the academic world. I've never considered how those patients might feel reading the very clinical, unemotional descriptions of their physical problems. As they aren't the intended audience, it wouldn't be a requirement to be anything other than scientific about it.

Disillusioned I read your application to the ethics committee - it is very good. Good luck for tomorrow and continuing luck for the future

I also read the submission and i hope that if other parents find themselves in a similar position of desiring intensive treatment for their little one they will be able to use the statistics that you have quoted to access the level of treatment that they believe right for their baby.

Good luck with the surgery sounds like you have a little fighter on your hands! Xx

I think the main issue is the difficulty of accessing treatment, but OP, although the "incompatible with life" terminology might facilitate the denial of treatment, you shouldn't think that it will be any less of a fight if they start using another term. It's all about resources. I have a 13/14 balanced translocation and when it was eventually diagnosed I tried to access the NHS to have IVF with PGD. When I had my first interview at the clinical genetics unit who would have done the testing, they were extremely interested in what I would do if I got pregnant naturally with a baby with a trisomy. They didn't say it in so many words but I was made to understand that they wouldn't prioritise me for screening because I was prepared to abort an affected baby. I saw IVF/PGD as a chance to have a healthy baby without having any more miscarriages but I think they saw it as a way of preventing the birth of any trisomy babies. You had to hold them to ransom by saying you would carry to term.

The trouble with the NHS is that when they don't have the money to help you, they will strongly give off the impression that you don't need or deserve help, and I can see how the "incompatible with life" label fits in with that. Personally I found it a comfort because it simplified the outcomes for us.

Oh, your beautiful daughter
I agree the phrase you mention sounds horrible, I think quite a few medical terms do, but as pps have said it's not meant in the way it sounds.
Massive hugs to you xxx

The problem with 'incompatible with life' for T13 & T18 specifically, is that they aren't. Yes, many babies with these trisomies do die in utero or very shortly after birth - but not all do. When I found that out it changed what I would have done on discovering a T13/T18 pregnancy.

Why does defect need to be used?

Why not say 'the limb hasn't formed/hasn't formed correctly?'

Defect does sound very harsh and clinical.

It makes sense to use for medical talk within the community but not when actual people who may be affected by those terms are around.

I think some things are changing though and better words replacing those which could be potentially hurtful- such as miscarriage no longer being spontaneous abortion etc.

Hopefully it will spread to others.

Why does defect need to be used? Why not say 'the limb hasn't formed/hasn't formed correctly?'
They mean the same thing. Not formed correctly = incorrect = defect. Any word used to describe a growth defect is, by definition, contrasting with normal/correct/expected growth and it would be possible for any one person to be upset by any one of those concepts because, by definition, they are conveying negative information.

Of course, if someone in the clinic says 'Please don't use use that word', it should be discussed in other terms. But ultimately, we are talking about things that aren't nice, that are upsetting and there's a fine line between using euphemistic language and failing to convey clinical information.

Yes I appreciate they mean the same thing, but one is harsher than the other imo.

When I was told there was likely something wrong with my baby, I would have punched someone using the term defective- it seems so much more labelling and callous.

That's just my opinion though.

It must be very hard for the medical community but some words and phrase do need amending, they aren't helpful or too general, and I think over the years we've seen a shift in that happening- from medical terms to descriptions.

Perhaps there is a far better way to say these things and it hasn't been used yet or thought up.

I suspect however that it's also more in tone and attitude.

I was upset with the blasé attitude of my sonographer whereas the nurse I saw was so lovely and empathetic, hearing the more clinical terms about the operation from her was okay because frankly she wasn't a completely cold bastard.

'We think your baby has a defective heart valve'. Is that really bad? Would that evoke a strong emotional response (to the phrase, obviously the condition would evoke emotion)?

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

I agree with Numb that it just seems a bit harsher or something.

I think something like "Your baby's heart valve hasn't developed/isn't working properly" seems just as informative but not as harsh and... negative (struggling to come up with the correct words to express myself here!)

The problem is that 'hasn't developed' might let some parents think, 'Oh, it hasn't developed yet but it will...'

I can see what PP are getting at on both sides of the debate. I can remember being pissed off when I saw a form a midwife had filled out after I'd had a (quite late and very bloody) MC where she'd written, 'Still upset about the "baby"', because I'd referred to the MC'ed foetus as 'the baby'. On the other hand, from her point of view, it wasn't a baby yet - and, objectively, it really wasn't a baby yet. To me, its mother, at approaching 11 weeks it was starting to be a baby, though.

There's clearly a difficulty in finding words that that accurately describe the situation but don't cause unnecessary distress to people who are going to be upset already. I think it has to be case by case, because some people will feel patronised by what they see as fluffy, evasive language which other people (even, possibly, the other parent...) feel is a nice kind way of phrasing things.

Lumela, sorry that should have been hasn't developed properly.

It does seem to me that some of the "gentler" language is more ambiguous- sometimes there are really hard truths that have to be conveyed. And it's very easy for parents to misinterpret information, particularly in highly emotionLly charged circumstances.

I disagree. I think you would need to clarify what you meant by 'defective' anyway whereas you could say from the start that the heart valve hasn't developed properly/wasn't working optimally (or whatever) and that would actually give you more information that he/she has a defective heart valve. Sorry, just running with the one example here!

Your baby's heart valve hasn't developed/isn't working properly But it might not be clear which, if either, of those possibilities is the case.