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.
- Follow ± DM me on Instagram: https://instagram.com/AliAbdaal
- My website / blog - www.aliabdaal.com
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
- BBC Article - A really good overview of what happened - http://www.bbc.co.uk/news/health-40554462
- Wikipedia for more in-depth stuff - https://en.wikipedia.org/wiki/Charlie_Gard_case
- Charlie Gard: An Ethical Analysis of a Legal Non-Problem - Blog of the Journal of Medical Ethics - http://blogs.bmj.com/medical-ethics/2017/08/11/charlie-gard-an-ethical-analysis-of-a-legal-non-problem/
- Great Ormond Street Hospital - Official statement, July 2017 - http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017
- Melanie Phillips - “A cruel and ignorant campaign” - http://www.melaniephillips.com/cruel-ignorant-campaign/
- Mr Justice Francis’ judgment July 2017 - https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf
- Forcible “euthanasia”: the ECtHR´s Charlie Gard Decision - https://www.ejiltalk.org/forcible-euthanasia-the-ecthrs-charlie-gard-decision/ - A piece that (I think wrongly) labels the case as euthanasia. There’s a rebuttal on the same website that’s also worth a read to hear the arguments against it - The Charlie Gard Case: Behind the Hyperbole - https://www.ejiltalk.org/the-charlie-gard-case-behind-the-hyperbole/
- “Never let an ill child to go waste” - Blog of JME - Iain Brassington commenting on the US media’s misunderstanding and politicising of the case - http://blogs.bmj.com/medical-ethics/2017/07/07/never-let-an-ill-child-go-to-waste/
- Isaiah Haastrup - A “Charlie Gard” legal battle - http://www.bioethics.net/2017/11/isaiah-haastrup-a-charlie-gard-legal-battle/
Who am I:
I'm Ali, a final year medical student at Emmanuel College, Cambridge. I'll be vlogging life and various other things throughout the year. I'm also making regular videos about application advice for UK medicine applicants, and at some point I'll start uploading videos of me and my friends singing popular songs.
- Follow ± DM me on Instagram: https://instagram.com/AliAbdaal
- My website / blog - www.aliabdaal.com
My YouTube Camera & Audio Gear:
1. My main camera - Sony A6500 - http://geni.us/sonyA6500aa
2. My first camera, the budget-but-amazing one I always recommend - Sony A6000 - http://geni.us/sonyA6000aa
3. My favourite lens - Sony 35mm f1.8 - http://geni.us/sony35mmf18aa
4. My wide-angle vlogging lens - Sigma 16mm f1.4 - http://geni.us/sigma16mmf14
5. My main microphone - Rode VideoMic Pro - http://geni.us/rodeVideoMicPro
6. My vlogging microphone - Rode VideoMicro - http://geni.us/RodeVideoMicroaa
7. (Very optional) Camera monitor - SmallHD Focus - http://geni.us/smallHDFocus
8. Vlogging tripod - Joby GorillaPod - http://geni.us/gorillaPod
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
Shanina Holmes I’d talk through the ethical issues - autonomy, beneficence and non maleficence are equal across the board (probably) so this is a justice issue regarding allocation of resources. It’s about weighing up the benefits for each, for which I might use a utilitarian approach (if I really had to decide between the two and all else being equal eg they both went on the transplant list at the same time, they both need the same organs etc). After all that spiel id talk about how we might take into account the suicide attempt, does the guy have serious mental health issues that’ll reduce his life/quality of life/ does he intend to attempt suicide again etc. We might also consider the dependents - does the guy have kids he has to provide for? We might also consider other health issues that both parties have that might limit their ‘benefit’ from the organs. It’s a tough decision and not one I’d want to make by myself, so I’d involve my seniors and we’d make a team decision
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
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?
Really good point you’ve raised - I messaged Abi about this and she said ‘I think we probably use the word 'empathy' to mean something that's usually closer to compassion/sympathy. Like 'i can't imagine what you're going through right now, but it must be so hard' would be thought of as an empathetic statement, not sure though, good Q’ :)
Ultimately the DNAR decision is a clinical decision, ie it’s the doctors who decide. However, they have a responsibility to include patients (and if the patient wants it, families) in that discussion. It’s a bit tricky because as a doctor, you might already know that your team won’t be attempting resuscitation on a particular patient because it’s not clinically warranted, but you still have to have the ‘discussion’ with the family, and a lot of doctors debate whether it’s really a discussion if they’ve already decided what’s going to happen, and whether it’s more of a ‘we’re informing the patient about our decision’. In most cases the patients and families agree with the team’s decision not to resuscitate which is the ideal outcome. Does that answer the question?
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 don’t 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 don’t know if lots of people will do that. Any suggestions?
Hey Harriet, I'd say if you're writing an EPQ-like essay then you probably shouldn't worry about what others are writing (unless one of the objectives is to write about something non-mainstream). Probably unhelpful advice, but pick whatever you'd be interested in, because if you're interested in it, it'll be much easier to write about, and you'll be able to write about it in a way that makes the reader interested too. The effects of music on dementia patients sounds interesting. Another way of being original might be to argue against the mainstream interpretation of a particular topic - eg: supporting the parents' view in the Charlie Gard case. Another suggestion - a friend of mine had an argument with some doctors on Twitter a few weeks ago about the use of WhatsApp and other instant messaging in hospitals: everyone does it, but technically it's against the information governance rules, so maybe a piece arguing for reformation of the information governance / confidentiality rules regarding sharing of information via WhatsApp / electronic records, might be interesting?
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.
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.
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.
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
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.
I think you’re right in saying that if the treatment had a 10% chance of completely curing Charlie then of course it would be worth trying, and I think the hospital would have been the first to suggest it. However, in Charlie’s case, there was no evidence that the treatment would work at all, and even if it did ‘work’ it wouldn’t have had a significant effect, and certainly wouldn’t have saved his life. I was talking to a friend about this yesterday, and he made the point that ‘would we be happy for Charlie’s parents to take him out of hospital, fly him to South America for some crystal healing therapy (which also has a tiny chance of success but no evidence in favour of it)?’
The experimental treatment proposed by Dr Hirano was effectively crystal healing, and most commentators on the case would probably agree that it’s right for the state to prevent the parents from potentially inflicting suffering on the child by flying him abroad for crystal healing.
What do you think? Should parents have the right to remove their child from hospital for the sake of a homeopathic / alternative medicine treatment that has no evidence behind it?
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
Thanks for your input on this - always good to open debate :) Please do correct me if I'm mistaken - your argument seems to be "we should use Charlie as an experimental subject because the results of that experiment could have helped kids in the future".
From a utilitarian perspective, this makes perfect sense - even if Charlie was suffering, surely the scientific knowledge gleaned from the experimental treatment would be 'worth' a few days of 'potential suffering' because the knowledge gleaned from the experiment *might* help future children with the condition. If I were a hardline utilitarian, I would agree. But most modern societies don't operate on strict utilitarian principles, and we tend to place an arguably disproportionate value on individuals compared to societal good.
You might argue "fine, but even Charlie's parents wanted to try the experimental treatment", to which the response might be "sure, but given that Charlie was *probably* suffering, surely it's moral and just for the state to intervene to protect him from this 'probable suffering'". We generally let parents do what they want with their kids, unless the safety of the child is in question, and in this case, the courts agreed that they had a duty of care to Charlie, and so despite what his parents wanted, attempting to prevent Charlie's suffering was the main goal, ie: putting the interests of the patient above those of his parents and above those of society.
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.
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 couldn’t be the case with a child as young as Charlie).
CDA Tech provides training and job placement assistance across a variety of careers. Contact us today to learn about the CDA Advantage.
Looking for a new career? Youve come to the right place.
Air Mixed Gas Commercial Diver Maritime Welding EMT DMT Our Programs.
*Underwater Welding Training at CDA Tech.
ROOM AND BOARD FOR MILITARY VETS.
CDA is proud to honor our vets. Thats why well waive both your registration fee and room and board when you attend CDA Technical Institute.*
*Restrictions apply, call for details.
After a successful career in the Army as an Army Ranger and Special Forces Combat Diver, CDA Technical Institute not only gave me a second-to-none education but they gave me the tools to be a successful, internationally-certified commercial diver! With CDAs education, the right attitude and the right work ethic you will be successful in this field!
Byron Beplay, AMGCD Program.
CDA Tech goes way past anyone’s expectations of a trade school. From the very first day this staff will be with you step-for-step making sure you feel exactly like family and helping you to succeed. I loved this school and everyone here. So take it from me: Come join the CDA Tech commercial diving family and be a part of this awesome industry!
Trey Lancaster, AMGCD Program.
I went to a trade school and got my welding certification and that was not enough. I found CDA technical Institute online and decided to become a Commercial Diver because of my love for the water. I had the best time going through CDA Technical Institute and I would definitely recommend this school to anyone looking for a career in Commercial Diving.
Brett Lamb, AMGCD Program.