Charlie Gard, legal battle over terminally ill 10mo in UK

[jozina]

Yeah, the main palliative care providers where I am are actually Catholic and what they provide (from a medical point of view) is exactly the same as what the secular or other religious providers have.  They'll happily set up a syringe driver.  The intention is big in a similar way to how the law views it. If you're giving medication to relieve symptoms and it has the secondary effect of hastening death then both are fine with it.

All of those interventions being one little choice at a time is huge.  A young child with a degenerative disease is completely different to an adult having say a stroke or a heart attack.  They're big events that people associate with death.  Adults get sick and die. A baby who looks perfectly healthy? First it's just popping some oxygen on via nasal prongs, then it's a mask, then it's CPAP, then they get stepped back down to a mask then whoops, they're worse again so back to the CPAP.  Then they get worse again so it's intubation, but even your doctors don't know how long it'll be needed so maybe it's just for a day or two right? So it's fine.  And then... It's hard to put that clear line in the sand, especially when you've had similar exacerbations in the past that resolved or you've got people whispering to you that there's hope. Babies just don't do very much so it's difficult for parents to comprehend why their baby has a very different prognosis to others. A tertiary centre like GOSH would have so many kids with tubes down their nose walking around or being wheeled around that the parents would likely not see it as a huge deal anyway.

Very honestly, if you think it'd be easy to choose where that line is then I don't think you've got a realistic view of what it's really like to make those decisions for a child. "Life support" is such a useless term medically anyway.  It isn't a big decision that's made at once for most people.  It's those little interventions adding up. The people who I see who can decide such a clear path for a child tend to have lived with the disability for years, seen how it's affecting their child in the longer run and have had multiple close calls which make them realise the end is near.  If they have a well known, clear diagnosis which is known to have very poor outcomes it seems to make it a bit easier on them too. It's a process, and if it's a process that's going on while you're still learning what on earth this condition is and grieving then it's horrendous. Children's palliative care is very difficult on the emotional and decision-making side.

[Jug Band Baby]

On 8/11/2017 at 9:30 AM, Mozzie said:

LOL it's so comical certain kinds of feminism believing women are oppressed are now being used against scientific facts in medicine!

Not on a debate angle, but from the medical angle: if a woman has a clotting risk i.e. obesity, smoking etc. and shouldn't take extra oestrogen, she can be given progesterone only contraceptive pills.

Why wasn't she offered that? 

I also saw a TV show (GPs - Behind Closed Doors in the UK) were a 50 something woman was angry at being denied her HRT calling the doctors 'rude', 'unprofessional' and 'ignorant' when they stopped issuing a repeat prescription for the HRT and asked her to come for a check-up before she could continue taking it. The GP explained 'we won't be responsible physicians if we give you drugs that could harm you without assessing the risk so we can't just prescribe because you want it'. The woman moaned 'but it's up to me as the patient to decide if I want something'.

I didn't see that there were replies.  She wanted the regular pill instead of the mini pill because there's more leeway with the full pill.  If you take it a few hours late, you're most likely going to be just fine and not land yourself pregnant.

One of my best friends pissed me off yesterday.  She says she was diagnosed with fibro as a child, but she's never seen documentation of it, and no doctor in all the years since have diagnosed her with it.  She's been missing a lot of work lately, and her boss wants a note that verifies she needs to be taking this time off.  Reasonable.  She's only going in 1 or 2 days a week when she's schedule full time.  But she can't get a doctor to write her a note.  She says the doctors should just listen to her and write the note, then work on giving her a fibro diagnosis.  I told her it doesn't work that way, and doctors can't just write notes without diagnoses.  Fibro specialists, rheumatologists, are who she's seeing to try getting a diagnosis, but those doctors, who are people who really believe it exists, aren't giving her a diagnosis.  But she's the patient, and they should so what she says, she said.

[jozina]

Oh heck no! You need to assume that usually patients are speaking what they believe to be the truth, but question more. I'm not putting my name down on a diagnosis or medical certificate without being very sure of the truthfulness of it.

Things I have heard:
"I have diabetes" - after my confusion that they were diagnosed as a teenager/in their twenties, but didn't monitor blood sugars at all, were not on any medication and never saw a doctor for it we get down to that when they fainted once as a teenager they were told by the school nurse it was low blood sugar or felt a bit funny once and their Aunt Agatha wisely told them it was low blood sugar/diabetes. I've had several diabetics who were not diabetic!

"I have endometriosis" - multiple times translates to "I had painful periods as a teenager/in my early twenties and it was a possible diagnosis." Endo is awful and diagnosis can be a nightmare, but there are a whole lot of self-diagnosed people with endo out there. And while the diagnosis can be something as mundane as painful/heavy periods, it can also be fibroids, endometrial cancer or other nasty/treatable things.

"I'm infertile" - often translates to someone being told they may have had endometriosis or having irregular periods as a teenager (which is very normal!) and someone saying they may have had PCOS.  You can be as fertile as a Duggar with both endometriosis and PCOS, but the number of "infertile" uterus-owners who come in pregnant...!

Not even starting on the Google diagnoses. Brilliant to take control of your health and educate yourself about it, but not to diagnose yourself.

[Ozlsn]

Charlie Gard's parents are apparently advising the family of another child with suspected mitochondrial depletion syndrome.

http://www.foxnews.com/health/2017/08/25/charlie-gards-mom-advising-parents-in-race-to-save-toddler.html

 

[HarryPotterFan]

14 hours ago, Ozlsn said:

Charlie Gard's parents are apparently advising the family of another child with suspected mitochondrial depletion syndrome.

http://www.foxnews.com/health/2017/08/25/charlie-gards-mom-advising-parents-in-race-to-save-toddler.html

 

Oh lord. They just need to get out of the public eye and get some serious therapy. I don't mean that in a snark way, but they need to work on accepting what happened and learn to cope with their grief.

[Jug Band Baby]

On 9/2/2017 at 5:39 PM, jozina said:

Oh heck no! You need to assume that usually patients are speaking what they believe to be the truth, but question more.

Exactamundo.  I think most people think they're telling the truth, but are misinformed.  But doctors have a responsibility to only declare diagnoses that are accurate.

Quote

"I'm infertile" - often translates to someone being told they may have had endometriosis or having irregular periods as a teenager (which is very normal!) and someone saying they may have had PCOS.  

Or somebody not conceiving in 3 months when their sister and mother each did it in 2 months.

On 9/2/2017 at 11:58 PM, Ozlsn said:

Charlie Gard's parents are apparently advising the family of another child with suspected mitochondrial depletion syndrome.

http://www.foxnews.com/health/2017/08/25/charlie-gards-mom-advising-parents-in-race-to-save-toddler.html

 

"Yates and Charlie’s father, Chris Gard, had raised $1.7 million to take their son to the U.S. for a treatment, but lost their months-long court battle."

How much of that money are they going to donate to this family they're advising on fundraising?

[Foudeb]

I believe they've already given that money to a charitable foundation to help other children with illnesses similar to their son's.

https://www.theguardian.com/uk-news/2017/aug/15/charlie-gard-parents-set-up-foundation-with-donations