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

[nastyhobbitses]

9 hours ago, unsafetydancer said:

Having worked on the fundraising team for a hospice for a bit I fully agree with the bit I bolded. The sort of support hospices can provide to the family who will be left behind is invaluable. I hope that Charlie's parents were given some of that wonderful support during their brief time in the hospice and that it will help them come to terms with his death.

The hospice nurses/support staff were incredibly helpful to my grandma, my mom, and my aunts when my grandpa was in his final days, and they made his passing much easier for him. They gave him dignity and compassion as he was dying, and because of that, I think the transition was easier than it otherwise would have been. Death is never easy, but having a great team of professionals help you and your family down the River Styx (or however you get to whatever afterlife you believe or don't believe in) makes it a little more bearable.

I really hope that Charlie's parents get some real help for themselves; I really think they need to talk to a social worker and a mental health professional after all this. Yes, I've been harsh on them, but I also think that they've been through an absolutely hellish situation, made some ill-thought-out decisions because of false hope/denial/media pressure/need to be validated, and now they need to process what they've experienced. They fucked up, but they were in a really fucked up situation. And I don't wish any of what happened to them on anyone. I hope that they'll be able to get the help they need to move forward.

[Ais]

Absolutely no idea if I've added this link properly, so fingers crossed! This seemed like one of the least sensational articles I've seen so far.

https://medium.com/@charlesarthur/charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12

[Palimpsest]

3 hours ago, Ais said:

Absolutely no idea if I've added this link properly, so fingers crossed! This seemed like one of the least sensational articles I've seen so far.

https:[email protected] /charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12

That is the same article @unsafetydancer linked on the previous page - and you are both right.  It is excellent.

20 hours ago, nastyhobbitses said:

I really hope that Charlie's parents get some real help for themselves; I really think they need to talk to a social worker and a mental health professional after all this.

 My MIL also used hospice and I have nothing but good things to say about it.  She actually outlived the expectations (you are only admitted to Hospice if you have a terminal diagnosis and life expectancy is <6 months.  They don't kick you out if you live more than 6 months though.

I've also volunteered with Hospice, partly because of that positive experience, and partly because I served on a state End of Life Commission.

I truly think Hospice provides a wonderful service.  What people may not know is that (at least in the US) it also provides grief therapy and support groups for survivors after the death.

I hope Charlie's parents take advantage of any and all mental health services  that are provided to them now.  

(And, by the way, in the US clinical LCSW and LICSW social workers are mental health professionals. )

[Ais]

10 hours ago, Palimpsest said:

That is the same article @unsafetydancer linked on the previous page - and you are both right.  It is excellent.

 

Whoops! on the double post but yay if I managed the link part correctly lol I am so clumsy with technology that I've avoided posting for fear of doing it wrong, now give me a ball of yarn and I could conquer the world! 

[Palimpsest]

56 minutes ago, Ais said:

yay if I managed the link part correctly lol I am so clumsy with technology that I've avoided posting for fear of doing it wrong,

Yay for you, indeed!  Now you have figured out the technology (it scares me too) please keep posting.

[WhatWouldJohnCrichtonDo?]

@Ais--Good job on posting the link! Most of the technological things I've learned in the last 2 years I learned because I wanted to do things on FJ.  

And you can't have any of my yarn to conquer the world. I don't share very well. 

[Ozlsn]

On 8/1/2017 at 0:36 PM, nastyhobbitses said:

I really hope that Charlie's parents get some real help for themselves; I really think they need to talk to a social worker and a mental health professional after all this. Yes, I've been harsh on them, but I also think that they've been through an absolutely hellish situation, made some ill-thought-out decisions because of false hope/denial/media pressure/need to be validated, and now they need to process what they've experienced. They fucked up, but they were in a really fucked up situation. And I don't wish any of what happened to them on anyone. I hope that they'll be able to get the help they need to move forward.

Me too. Especially as they've shown thst one of their responses to extreme stress is to lash out - if they don't have GOSH and the courts to aim that at, I worry that it will end up directed at family and each other. As I said earlier, their relationship may or may not survive, but if they can get help so they don't damage family relationships it would be better for the long term. I really feel for them, they have been reacting to new information and on a massive emotional rollercoaster for eight months. Thursday will be tough for them; almost every day will be for a while. I hope they have someone who is able to listen and support them. 

[Jug Band Baby]

On 7/24/2017 at 7:54 AM, Mela99 said:

this is all just beyond awful. 

I can't even fathom their agony. 

Though I have to say I don't like the idea of doctors making decisions in place of parents. 

Sometimes it's needed.  What if a toddler of a Jehovah's Witness made the decision of no blood transfusion, even if it meant the toddler would die?  Or the Christian Scientist parents of a young child with cancer deciding the treatment will be prayer?  The harsh reality is a lot of parents won't make sound decisions, or will even make actively harmful decisions.  When all power is removed from doctors, then there is no longer even a point to having doctors.  Children have rights separate from their parents, and the rights of the parents are in how to meet those rights.

A week or 2 ago, I read a debate online on whether or not doctors should be allowed to refuse medications or treatments to adults if the adult says they know the risks.  This was started by a smoker in her 40's who has already had clotting issues who was pissed her doctor wouldn't prescribe the birth control pill for her since she was tired of using condoms.  She says her rights are being violated because she "knows the risks," but as the debate went on, she said she believed the risks are just lies made up to oppress women, which shows she doesn't know the risks.  Also it was asked, if an opioid-addict said she knew the risks to taking more, should a doctor really be expected to hand over a prescription and keep the deadly cycle going?

On 7/24/2017 at 9:22 AM, Stormy said:

I'm under the impression that the parents wholeheartedly believed this treatment would not only save their son, but make dramatic improvements to his quality of life. That's why they went on the warpath against anyone who doubted them; they only backed down once that doctor they'd worked so hard to access confirmed that Charlie was beyond saving. It'd be another story if they dug their heels in further (a la Jahi McMath), but it seems like this is a case of parents who truly exhausted every possibility to save their child (physically and figuratively). Any parent would do that.

The doctor who gave them that hope should be stripped of his license for declaring a 10%-57% chance of "significant improvement" before ever seeing the baby or getting records.

I want to think they really believed he'd get up and walk someday, but I think they were in denial about how sick he was at all, and they were willing to trash the hospital for not helping them believe it, especially when the American idiot made claims he shouldn't have made.

On 7/24/2017 at 9:41 AM, sawasdee said:

I must say that I believe that the US doctor does not come out of this well. He seems to have held out hope to desperate parents long after it was realistic, and on actually examining him, quickly withdrew.

I hope he loses his license.  If he wanted to say anything, it should have been he'd like to examine the baby to determine if it could work instead of saying publicly that that is a 10%-57% chance that it WILL work significantly.  He did a very bad thing not waiting to get the information first-hand.

[jozina]

On 8/3/2017 at 10:32 AM, Jug Band Baby said:

A week or 2 ago, I read a debate online on whether or not doctors should be allowed to refuse medications or treatments to adults if the adult says they know the risks.  This was started by a smoker in her 40's who has already had clotting issues who was pissed her doctor wouldn't prescribe the birth control pill for her since she was tired of using condoms.  She says her rights are being violated because she "knows the risks," but as the debate went on, she said she believed the risks are just lies made up to oppress women, which shows she doesn't know the risks.  Also it was asked, if an opioid-addict said she knew the risks to taking more, should a doctor really be expected to hand over a prescription and keep the deadly cycle going?

1

My mind is screaming every expletive I know here. It is so common though! The number of patients you get who insist they want X despite it being a terrible idea, then start on about you being an idiot/treating them like a child because you say no is insane. A huge part of medicine is using your clinical judgement, developed over years of education and training, to decide what's best. As soon as people start on about them knowing better because they know the risks/it's their body I want to scream. Sometimes emergency seems like drug seeker after drug seeker. Why not just start selling every medication out in the supermarket? If we weren't allowed to refuse a script we may as well just be shopkeepers, helping people get what they think they need.

[seraaa]

An anonymous member of Charlie's medical team wrote this article, which appeared in the guardian today.

https://www.theguardian.com/uk-news/commentisfree/2017/aug/04/it-was-our-agonising-job-as-charlie-gard-care-team-to-say-enough

[Buzzard]

15 minutes ago, seraaa said:

An anonymous member of Charlie's medical team wrote this article, which appeared in the guardian today.

https://www.theguardian.com/uk-news/commentisfree/2017/aug/04/it-was-our-agonising-job-as-charlie-gard-care-team-to-say-enough

I truly feel bad for the staff that had to not only watch a child die, but deal with the internet Drs who clearly think they know better.

[unsafetydancer]

@seraaa was actually just about to post this, read it on the bus home.

All the social media idiots and the above mentioned internet doctors forgot that the people treating Charlie are doing a tough job where sometimes your absolute best still isn't good enough to save a child's life. I hope that they can eventually come to feel proud of how hard they all tried; even if they didn't ultimately save this child's life they all did the best they could in a situation that most people would find impossible.

[Ais]

12 hours ago, seraaa said:

An anonymous member of Charlie's medical team wrote this article, which appeared in the guardian today.

https://www.theguardian.com/uk-news/commentisfree/2017/aug/04/it-was-our-agonising-job-as-charlie-gard-care-team-to-say-enough

What a heartbreaking article, but definitely a point of view that needed heard. During my mothers last 9 weeks she spent a lot of time on acute cancer wards and hospice care. Every patient who passed during our time there was mourned and wept over by staff. As a carer in a former life I can also see this from that point of view. I still think randomly of certain clients and regret not being able to do more for them almost 20yrs later.

[Jug Band Baby]

On 8/4/2017 at 3:08 AM, jozina said:

Why not just start selling every medication out in the supermarket?

Exactly.  The whole "do no harm" bit means not actively harming people.  Ignoring good clinical sense and just handing out pills like candy is harming!

[Shadoewolf]

Charlie survived 12 minutes without his vent, then passed peacefully. His parents were allowed to take his body home for a few days in a specially chilled bed. I haven't seen anything on his burial as of yet. 

[Mozzie]

On 8/3/2017 at 1:32 AM, Jug Band Baby said:

A week or 2 ago, I read a debate online on whether or not doctors should be allowed to refuse medications or treatments to adults if the adult says they know the risks.  This was started by a smoker in her 40's who has already had clotting issues who was pissed her doctor wouldn't prescribe the birth control pill for her since she was tired of using condoms.  She says her rights are being violated because she "knows the risks," but as the debate went on, she said she believed the risks are just lies made up to oppress women, which shows she doesn't know the risks.  

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'.

[jozina]

There are contraindications for progesterone only contraceptives too-unexplained vaginal bleeding, certain medications, some antibodies and a history of breast cancer for instance. Plus many women don't like the idea of it being slightly less effective as a contraception and it causing vaginal bleeding for some women. People who start off on conspiracy theories about things like that seem to always neglect to remember or share that other options were presented. I mean some doctors are rubbish and some are rude, but plenty of patients are rude and aggressive too.

[Shadoewolf]

I work in the medical field, often times with aggressive patients who want what they want. Or dear Rufus they've googled something and now they have every condition under the sun.  Even though I experience it, I can be the same way with my doc when it comes to my thyroid meds. I know how different meds make me feel vs what the labs say and I pushed really hard to get put on the drug I'm currently taking, even though it's not the 'norm'. I've slammed down 20 pages of research onto the table and told 2 endocrinologists to enlighten themselves. I got the drug I wanted, I've felt better in the last year than I have since I was diagnosed 20 years ago and my labs are great. I'm a tough patient, I admit it!

Its all about finding a balance both doc and patient can live with. 

[Ozlsn]

Charlie's parents are setting up a foundation to help other children with very rare diseases. Not quite sure if it's to support research, or help families access treatments but I guess it's not a bad use of the money raised.

http://www.bbc.com/news/uk-england-london-40940881

[feministxtian]

I may be a cold-hearted bitch, but I cannot imagine trying to keep someone alive on life support. With my mother they offered a feeding tube for nutrition/hydration after the last stroke that put her into a coma. I rejected it. I mean, she was breathing, but her body was already coiled up in a fetal position, she had bedsores that went down to the bone (even with the best of care, it happens), her kidneys were failing and I couldn't see prolonging the inevitable for her OR me. With my aunt, they offered a pacemaker...she was 95 and had dementia. All I asked was that she be able to leave this world pain-free. 

With the little one, what was the point of trying to keep him alive? Those pictures of him with a vent tube in one nostril and a feeding tube in the other just bothers me to no end. IF it had been my child, I'd have just held him until he passed. 

Am I really cold-hearted or just way too much of a realist? 

[Ozlsn]

41 minutes ago, feministxtian said:

I may be a cold-hearted bitch, but I cannot imagine trying to keep someone alive on life support. With my mother they offered a feeding tube for nutrition/hydration after the last stroke that put her into a coma. I rejected it. I mean, she was breathing, but her body was already coiled up in a fetal position, she had bedsores that went down to the bone (even with the best of care, it happens), her kidneys were failing and I couldn't see prolonging the inevitable for her OR me. With my aunt, they offered a pacemaker...she was 95 and had dementia. All I asked was that she be able to leave this world pain-free. 

With the little one, what was the point of trying to keep him alive? Those pictures of him with a vent tube in one nostril and a feeding tube in the other just bothers me to no end. IF it had been my child, I'd have just held him until he passed. 

Am I really cold-hearted or just way too much of a realist? 

I read "The Still Point of the Turning World" by Emily Rapp, which is an account of having a child with Tay-Sachs. One of the things that stood out to me is that because it is degenerative every further deterioration requires a fresh decision - do we tube feed? Give respiratory support? Resuscitate? I know that is the case with all degenerative conditions, but I think it is especially hard when it is a child. I think Charlie's parents were unable to let go until they knew all options had been exhausted - and in the interim they had made so many small decisions to keep him alive that ended up with the final pictures. To be honest they didn't bother me - my son had both those tubes in place for quite a large part of his first four months of life, so a bit normalised for me.

Would I make the same decisions as Charlie's parents?  Honestly I don't know. I doubt I would have gotten as far as the multiple court cases, but I could see getting to intubation and NGT in small steps. In the end though, NGT and vent or not, given there are no treatments it would likely come to holding the child and hopefully comforting them as they died. How long you hold on to hope though is tricky. I think in early December when GOSH first contacted the US doctor it was still reasonable. By the start of January though... that is probably when I would have accepted that there were no more options. He was already on the NGT and vent by that point though I think.

[Foudeb]

5 hours ago, feministxtian said:

I may be a cold-hearted bitch, but I cannot imagine trying to keep someone alive on life support. With my mother they offered a feeding tube for nutrition/hydration after the last stroke that put her into a coma. I rejected it. I mean, she was breathing, but her body was already coiled up in a fetal position, she had bedsores that went down to the bone (even with the best of care, it happens), her kidneys were failing and I couldn't see prolonging the inevitable for her OR me. With my aunt, they offered a pacemaker...she was 95 and had dementia. All I asked was that she be able to leave this world pain-free. 

With the little one, what was the point of trying to keep him alive? Those pictures of him with a vent tube in one nostril and a feeding tube in the other just bothers me to no end. IF it had been my child, I'd have just held him until he passed. 

Am I really cold-hearted or just way too much of a realist? 

If you're sure it's not going to get better then obviously it's better to let go and focus on making it pain-free. But the question is, are you really sure? Charlie's parents obviously distrusted the many doctors and several judges who said so and instead believed the one doctor that told them otherwise. It does look foolish from the outside, but truth be told? If this were my own child, I may well have chosen to believe the one person who said there was a chance of improvement.

That's why I put the blame on that doctor - if he told the parents there was hope without even having looked at the medical file properly, that is nothing short of cruel. And the Charlie's Army people, Trump and Pope included, were trying to do good, but may have done a lot of harm on the way in providing the parents with an echo chamber of "yes, you're right, he could get better with the right treatment" which helped them ignore the many doctors that did know his medical file.

[littlemommy]

And how many inspiring books and movies are there out there, telling us how "One Mother's Courageous Fight" or "The Dad That Never Stopped Believing", etc etc pulled their child through. Against all odds. Against everyone that told them it couldn't be done. That person persevered, and their child/loved one lived happily ever after. 

Hope is a funny thing. In a twist on something another famous movie once said, sometimes hope is the best thing. Sometimes it's a dangerous, hurtful thing. 

I don't know what I'd do in this situation. I'd like to think I'd be logical and compassionate. And if I was too distraught to trust doctors, I'd hope that there would at least be someone I did trust, like a friend or extended family member, who would care enough about me and my child to help me make a good choice.

[Howl]

12 minutes ago, littlemommy said:

I don't know what I'd do in this situation. I'd like to think I'd be logical and compassionate. And if I was too distraught to trust doctors, I'd hope that there would at least be someone I did trust, like a friend or extended family member, who would care enough about me and my child to help me make a good choice.

The hospital involved will make a big difference.  If it's a Catholic hospital, especially, the choices will be much more limited and in line with Catholic doctrine.  

[Ozlsn]

18 hours ago, Howl said:

The hospital involved will make a big difference.  If it's a Catholic hospital, especially, the choices will be much more limited and in line with Catholic doctrine.  

According to Simcha Fisher there would be no problem with palliative care in a situation like Charlie's. Quick disclaimer: I am not Catholic so no idea how accurate her interpretation of Catholic theology and its application on the ground is. 

https://www.catholicweekly.com.au/simcha-fisher-charlie-gard-will-die-but-is-it-murder/