Charlie Gard - Medical Ethics and Law
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- Äas pĆidĂĄn 6. 08. 2024
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In this video, we'll be discussing some of the ethical and legal issues raised by the case of Charlie Gard. Charlie (4 August 2016 - 28 July 2017) was born with a rare, incurable and life-limiting disease called MDDS. His case became controversial because the medical team and parents disagreed about whether experimental treatment was in Charlie's best interests.
Abi and I are 6th year medical students at Cambridge University, and in this video we've tried to introduce you to some of the issues that Charlie's case brought up. We've made every effort to check our facts, and have referenced a number of useful resources (that we ourselves used) below. If we've made any mistakes, or if you disagree with our analyses, please do comment below - we'd love to learn from you.
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TIMESTAMPS
00:38 - What happened in Charlie's case - A summary
02:56 - Opening remarks from Justice Francis' statement
05:12 - The legal side of things
06:00 ----- Dr Hirano's experimental treatment
08:08 - Moving on to the ethical issues
09:10 - 5 ethical issues raised by Charlie's case
09:50 - #1 - Autonomy
11:40 ----- UK vs USA systems
14:05 - #2 - Beneficence vs Non-maleficence
18:02 - #3 - Justice / Allocation of resources
19:37 - #4 - The ethics of experimental treatments on children
21:38 - #5 - Was this euthanasia?
24:19 - Wider social issues raised by Charlie's case
26:45 - Concluding remarks
LINKS
- BBC Article - A really good overview of what happened - www.bbc.co.uk/news/health-4055...
- Wikipedia for more in-depth stuff - en.wikipedia.org/wiki/Charlie...
- Charlie Gard: An Ethical Analysis of a Legal Non-Problem - Blog of the Journal of Medical Ethics - blogs.bmj.com/medical-ethics/2...
- Great Ormond Street Hospital - Official statement, July 2017 - www.gosh.nhs.uk/news/latest-pr...
- Melanie Phillips - âA cruel and ignorant campaignâ - www.melaniephillips.com/cruel-...
- Mr Justice Francisâ judgment July 2017 - www.judiciary.gov.uk/wp-conte...
- Forcible âeuthanasiaâ: the ECtHRÂŽs Charlie Gard Decision - www.ejiltalk.org/forcible-eut... - A piece that (I think wrongly) labels the case as euthanasia. Thereâs a rebuttal on the same website thatâs also worth a read to hear the arguments against it - The Charlie Gard Case: Behind the Hyperbole - www.ejiltalk.org/the-charlie-...
- âNever let an ill child to go wasteâ - Blog of JME - Iain Brassington commenting on the US mediaâs misunderstanding and politicising of the case - blogs.bmj.com/medical-ethics/2...
- Isaiah Haastrup - A âCharlie Gardâ legal battle - www.bioethics.net/2017/11/isai...
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Who am I:
I'm Ali, a junior doctor working in Cambridge, UK. I make videos about medicine, technology, productivity and lifestyle design. I also have a weekly podcast with my brother ( / notoverthinking , and I write a weekly email newsletter that contains some quick thoughts + links to interesting things (aliabdaal.com/newsletter/).
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your friend has such a soothing voice and manner! great video you guys
I truly appreciate your time and effort to make these videos. They will help so many students!
sorry to be so offtopic but does someone know a trick to get back into an instagram account?
I was stupid forgot the account password. I would appreciate any assistance you can offer me
I'm preparing for my med school entrance interview and your videos have helped me out a lot. Basically everything in your channel is helpful. It's given me a better insight on the life of a medical student. Thank you so much.
Abi said "we have to remember that they're dealing with loss that none of us can really comprehend". This made me think - empathy is a really important attribute of a doctor (or is said to be) but can you really empathise with people going through that? What parts of medicine can we empathise with a patient if we haven't gone through it ourselves? Is compassion more important than empathy?
I have always pondered this, I feel like there's only so much you can understand about a person, it's most likely that they would have grown up in a different culture/religion/values/abilities etc, so I don't really understand how we can fully empathise with a patient, I feel like we can only do it to an extent really, would this be a good point to bring up during an interview?
I think if you could back it up well then it would be good and if it fits in with the question. I've had 3 interviews and have not yet been able to talk about it.
Very insightful and clearly explained video. The setting, background music and you two ofcourse, compliment each other perfectly. Would love to see more !
Ali! Excellent comprehensive video explaining the nuances of this case. Really appreciate you taking the time to create these videos.
Super great video once again! Thanks for the taking the time to make these.
thank you so much for this series!
Ali is such an inspirational guy and so genuine and down to earth... wish I will be able to study medicine at Cambridge in the near future like you
Shared this video before I finished watching. It's so useful
Thank you so much for this! I am writing my uni ethics assignment on the case of Charlie and this has been a god sent!
I am using this video with my children's nursing students and its a wonderful discussion to help them understand the issues associated with these painful decisions. Thank you
Very useful. Student of Law from India. This helps me in deciding the subject I should take as an optional subject in my second year. Thanx a ton.
You give such light into these difficult and dense topics! I truly wish you the best in your career. Keep up the good pace :))
- medschool student and Puerto Rican fan đ
Hi Ali! thank you so much for all you do to foster this medical-loving & aspiring community. I was wondering if you could record a video on NHS policy and essentials to know for MMI or if you have some valuable resources to direct me to?
I have my interview in 10 days and as an international applicant it'd really help to get a grasp on it!
Thank you so much!
Cheers
These videos are really helpful in prepping for interviews! Question: Who decides which patients to not resuscitate? And are the patients/ families included in this discussion?
This is a fabulous video. Thank you.
Thanks for this video! Very useful :) the background music was a bit too loud though.
Thank you for this discussion.
This was an exceptionally made video! Nice one
Ali all i can say is thank you. Thank you thank you!
You are also correct, that when Dr Hirano saw a more recent scan (July 2017) his opinion then changed. But what has not been mentioned is that Charlie Gard' s parents wanted to transfer their son to Dr. Hiranos care months earlier. Based on scans at that time, there was a chance the treatment might have had success. But GOSH (Great Ormond Street Hospital) refused to let Charlie transfer at that time, and motioned to have parental rights removed.
The legal battle began.
And Charlie's condition continued to deteriorate without any treatment as court battles ensued.
No one will ever know if the treatment might have been successful in Charlie's case?
There are many facts to this case which have not been covered by the MSM.
thank you soo much for the fruitful discussion ! I have to present about this case tomorrow pray for meee
Thank you so much for putting up these videos. May I ask your opinion on other current/recent topics, such as staffing shortages and junior doctors' strikes?
Ali Abdaal omigosh this vid would be so useful before my interview on Wednesday!! :)
What is your background music? Itâs soo calming. Btw great video as always!
Fantastic video, thank you again! I have a dilemma I was wondering you could help me with-at my school I need to do an essay similar to an EPQ. I will be doing it on a medical topic, but I donât want to pick something that will be overdone. I know, for example, an essay on something like this case will be common, but I want to do something different and original, but still really interesting. After you nearly 6 years of training, is their anything that you think would make a good topic? My only though at the moment was the effects of music on dementia patients, but I donât know if lots of people will do that. Any suggestions?
What are your thoughts on Dr Bawa Garbaâs case ?
Thank you so much
Just had a question on this. Literal life saver!!!
Great video.
Dear Ali you should creating more this kind of videos
Hey Ali I just wanted to say that this series is sooo helpful, thank you so much also I wanted to ask you if you were given an ethics question where you had to prioritise between 2 patients say for a blood transfusion or an organ transplant who would you choose? A 14 yr old girl that just had an accident and a 41 yr old man that attempted suicide. Could you please tell me how you would tackle this question please and thank you
Ali Abdaal thank you sooo much I was really stuck on those sorts of Aâs where you have to choose one or the other
Thank you for the video series. Would it be possible removing the background music to eliminate any noise distraction? Thank you for your consideration.
nice video đ
I truly feel that he should of been given the chance for an experimental treatment even if in the end the treatment didn't work the parents can know that they have tried everything.
I agree but not when that treatment can potentially do more harm to the baby than not having the treatment. The experimental treatment may have put the baby in a lot more distress which means it may not have been worth it.
Nucleotide Therapy is not painful, but when hospice removed life support, Charlie suffocated, and struggled to breathe for 12 minutes before he passed away. His parents had to watch this.
When life support was removed from Alfie Evans, he did not die, despite "expert" testimony stating that he would die within 15 minutes. Then hospital refused to feed him. Family had to fight for two days to try and get nourishment for his son.
Being okay with euthanasia, passive or active, is getting into dangerous territory. Remember who is the 'father' of Eugenics taken to this level ... Hitler
The court battles delayed whatever efficacy that treatment could've done.
this music making me wanna cry
thank you Soo much !! .. (Abi is really cute Btw)
The music in the background was to much
Why does non consensual non therapeutic infant circumcision still happen?
hey, really informative and great video, however the music can be a little distracting at times, perhaps you could lower the volume next time?
During this case I was arguing hard for Charlieâs parents. I know the medicine and the odds were slim to none but ultimately this case proved that British people have less freedom than we thought.
People would say the doctors and judges understand the case better and the parents are being emotional etc but I always ask how many times a year will those doctors nurses, lawyers and judges visit Charlieâs grave?
Just a point that perhaps the people best suited to make decisions for a baby are the people who love them most.
USA offered help
Vatican offered help
Parents wanted to receive it
Hospital went out their way to make sure that didnât happen.
What disturbs me is the hospital went out their way to subvert the wishes of the parent and ensure Charlie died.
I believe they believed they were doing the best thing for Charlie, theyâre not evil.
I heard people compare this case to religious people refusing blood transfusion and the doctors over rule the parents wishes to save the baby. This is done to save life not to overrule parents.
This is a case where a hospital/court overruled parents to ensure the childâs death.
Does anybody else see this dramatic difference here?
Some people only see this as parents vs doctors and doctors win,
I see this as âCharlie lives vs Charlie diesâ
what if it was a life-threatening situation, who decides what to do with the patient? the parent or the mdt?
The patient if capable and there are reasonable choices, again assuming there are reasonable choices then the parent. If there aren't then the doctors and if challenged the courts
Actually, Nucleotide bypass therapy has had success in treating children with Mitochondrial Depletion Syndrome. And, yes, it is still in experimental phase.
Could you give me your view point in covid vaccination of children.
If the Child was going to die anyway the knowledge gained from the treatment could have saved future children. Letting the state say you can't give your dying child experimental treatment is not moral or just. Saying the parents don't have control of the child is such a alien concept that I can't believe a free people would put up with
No I'm saying the parents wanted to take their child (not the governments) to try a experamental treatment that had a 10% chance of helping Charlie in sum regards. This would have eliminated the emotional truama of the parents and given Charlie that 10% chance he deserved. A result of letting the Parents have their choice if the treatment did not help (which it probably wouldn't) the doctor could have gained valuable knowledge of this treatment to the disease. Parents choice would have resulted in piece of mind knowing the did all they could and Charlie deaths would not be in vein but possible help future children. just saying suffering is not a reason to A) take away the parental rights from loving caring parents B) Block you from Treatment elsewhere no matter the risk when they are simply going to let you die at that point the risk of death is the Hospital you are in vs the Hospital offering you 10% chance of life
briannxx how is not putting a 11 month old baby into a never tested treatment not moral? Would you put a baby that couldn't even open his eyes and cry into such thing? He's suffered a lot and allowing him to even live since discovering this was enough pain both for him and the parents, I dont personally think putting a baby who had suffered enough into more suffering just to see if it would do something for the public (Because this wouldnt have helped him at all, he had significant irreversible brain damage and multiple organ failure that won't be reversed, it might had been a little helpful if he hadn't reached the stage he was at) is not right, that's why we have animal models and cell cultures to test on, it's funny how you criticising expert people who have been there for the child since the beginning when they're the ones being rational and caring about Charlie. Honestly I dont think i can ever understand people like you.
@@briannxx Letting a baby suffer to be a guinea pig for untested medical treatments, when that infant will not survive (which all the experts had agreed,) is in no way moral.
I just never understood, if the parents had the money to fly their own child across the world for what they believed was life benefitting treatment, why would/could the hospital stop them from that? That is the part I can not understand, whether 'experts' believed he was in pain, I just felt is irrelevant to what the parents believed were in the best interest of their child. Thank you both for providing this overview, it is very good.
i can imagine that the larry nassar case has had a big hit on the medical community. would you guys ever consider making a video about it in relation to medical ethics?
this is a good article to read for an overview of the case: www.theguardian.com/sport/2018/jan/27/larry-nassar-trial-gymnastics-sexual-abuse
I really hope I would have subscribed to your channel earlier.
And people tell me the death penalty was abolished in 1967.
Well hereâs a judge who sentenced a baby to a certain death, or preventing his slim chance of health.
i would die for abi
Interesting you say âthe parent say one thing and the doctor say another you need a third party to arbitrateâ
Unless the parents are advocating for something that is cruel and unhealthy like withdrawing treatment then yeah youâre right. But all other cases should the parents choice After all they love that baby more than the doctors or judges.
They advocating to move Charlie to get experimental treatment that may help himâŠ..not denying transfusions because of religion.
Ultimately who is in charge the parents or the doctors? And who should be in charge?
Great almond street was just embarrassed that if they moved him and the Americans or Italians were able to help they would lose prestige and funding.
Charlie gard was one of the darkest episodes in British justice/healthcare.
They did cover the reason the case went to court as being the rarity and severity of his condition. Tests suggested Charlie was in pain and it wouldâve been inhumane to prolong his suffering so that a poor little baby could be subject to experimental treatment.
Itâs a really sinister assumption for you to conclude that a hospital would ever withhold life saving treatment because they did not want Americans to claim the success.
I suggest you read further on this topic and perhaps rewatch this video that addresses a few of your concerns.
There are many cases where the NHS provide the budget for rare treatment of UK-based patients who are sent to other countries for it (if the treatment is not available in the UK).
Fundamental rule of English (and Scottish) law is that parents do NOT have rights over children. No one has a right over anyone else unless they are slave. What parents do have is a responsibility to protect their child's right which is something very different. That is the same in every 1st world country with the exception of the US where kids are far more seen as property (its Christian fundamentalism). Doctors do not have a legal , financial or medical relationship with the parents of a child. They obviously will have a human relationship with those parents but that is something different
Iam Charlie Gard, Hospital praticou eutanĂĄsia. Eu lembro. Este hospital praticou eutanĂĄsia!
Still very sad for the parents, they should have been able to take Charlie to America. 28/7/19 today so thinking of Charlie.
It's not a question of who was right in knowing the best interest of Charlie, it is about whether or not the state has control over someone else's child. You British have to regard for liberty.
Wow the lady is so cute đč. Why so cute lady choiced such devil's (solicitor) profession.
Why do you consider pursuing medicine ( contributing to saving lives) as a bad thing?
Playing sweet music doesn't make your parents don't have rights over the child just because the government claimed suffering anymore wrong and disturbing
What you are failing to understand is that in this case, all the evidence suggested Charlie was suffering (in pain) and that the experimental treatment would have no benefit in helping him recover. Every day fighting with the court resulted in more suffering by the patient. It is the role of the doctor and the legal system to step in when raw parental emotion is clouding judgement. If we let parents have an unrestricted 'right' over the treatment of a child we risk overlooking serious abuses in the system. I'm sorry to inform you, but that is simply not an option in a fair, just society. Perhaps you should listen to the arguments set out relatively clearly in this video with open ears.
Define suffering! Also the amount of time they let that child lay there "suffering" he could have been to the US gotten the treatment and the parents would have known the truly did all the could, the doctor would have gained valuable knowledge of the treatment that could maybe help future patience. Charlie probably would have died but it would have been without traumatizing the parents and gaining valuable research of a disease that could have saved lives.
I literally defined what I meant by suffering in brackets (IN PAIN, NOT BREATHING WITHOUT VENTILATION). From the way you are framing your argument, it is obvious you are not a scientist or a medical doctor,. So you're understanding of the mechanisms underlying the offered treatment is extremely limited. We can not accept it when parents want treatments that will not offer any hope of helping their child recover or get better. There is a little something called empirical evidence and when that is not provided we can not simply let children go to die whilst suffering. If you watched this video you would have learned something about the framework of medical ethics, and that is that when a patient has not got the ability to consent to a treatment it is not right to act against their best interests. In this case, the best interests of the patient was disputed between the doctors and the parents hence why an independent body was needed to IMPARTIALLY ascertain the BEST interests. Of course the parents were traumatised, all parents would be. But the risk of their trauma does not trump the BEST INTERESTS of their child, which they were not in the position to judge given their emotional investment.
Here we go again, "The government." It wasn't the government it was the hospital.
The parents not the state have sole rights over the child
Also the US Doctor could have gained valuable knowledge that could have saved kids in the future
briannxx
At the expense of pain and suffering for the child - with minimal gain for him. Medicine is patient centred - a doctor's main focus is their patient. It would be wrong to choose a treatment plan that would not be in the best interest for the child even if it could help millions of people in the future (unless the patient him/herself chooses - which couldnât be the case with a child as young as Charlie).
Briannxx are you American by any chance? Because it would explain your lack of understanding the National Health service and English law. It's not the state, it's not the government and parents do not have sole rights over a child. Watch the video again.
briannxx kid had no life left. wasnt safe. also, charlie was made a ward of court.
The girl needs to be clear when she tell something, otherwise no one will understand .And video will be useless.
The bottom line is the state held a child against the parents will to try and help the child over the state just wanting to justify his death
I feel like you assume a lot about Americans but then critize us for making assumptions
Sad he died. He could have been helped.
It is quite sad but how do you think he couldâve been helped if there was no treatment and he was just suffering his whole life đ
Just had a look at your website! and came across your channel a few days ago, and you are just a Godsend! thank you, thank you, and thank you again :) I really appreciate all the effort you put in the video's, makes it easier and more enjoyable to watch
Fantastic videos, I really appreciate your ability to carefully walk us through the complexities of medical ethics!