8/19(Sat.)Life support withdrawn, babyCharlie dies(Vicky)

8/19(Sat.)Life support withdrawn, babyCharlie dies(Vicky)

文章VickyWu » 週四 8月 17, 2017 12:23 am

Hi Yoyoers,

Not familiar with this interface. So many flaws. Please kindly tolerate and understand. 8)
This time, we will read through a serious issue associated with life ethics which has been controversially discussed across the world.
Charlie, being terminated his life at age of 11 months, was born with an incurable genetic mutation in DNA which caused progressive brain damage and muscle failure. He could not breathe by himself and was placed on artificial ventilation by the hospital. Since the hospital formed the view that any further treatment was futile and might prolong suffering to Charlie, the hospital filed a suit to withdraw Charlie's life support. Instead, they contend to only provide palliative care in order to prevent prolonged suffering while his parents attempted to seek for an experimental treatment done in NY that had ever merely worked on mice but not on human beings and they raised fund on the internet. As a result, UK Supreme Court reached a decision on June 8, that the desperate parents' appeal was refused, meaning the hospital was entitled to take away Charlie's life sustaining mechanism which would lead to an immediate death for an infant like Charlie.
Charlie died on July 29 and left an extended debate which involves emotion and reason, dignity and suffering, child's best interests and parents' privilege, worth our rethinking and perception.


Here comes a commentary article.
source:Baby Charlie Gard dies after life support withdrawn



Here also comes the Lady Hale's oral intepretation and its transcripts for UK Supreme Court's decison for those who might be interested in learning more.


Lady Hale's explanation of the Supreme Court's decision


Lady Hale's explanation of the Supreme Court's decision, as delivered in court on 8 June 2017

Transcript:
Charlie was born on 4 August last year, so he is now ten months old. He had all the appearance of a normal baby at birth. But he has a rare inherited disease, infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). This means that his condition has deteriorated seriously since he was born. He cannot move his arms or legs or breathe unaided. His brain is also severely affected, and there was a significant decline in the level of his brain functioning in January of this year. He is kept alive by a mechanical ventilator.
His parents agree that his present quality of life is not worth living. But they have been offered the prospect of a new treatment in the USA, deoxynucleoside therapy, which, it is thought, might result in some amelioration of this disease. This has never been tried on human beings or animals with this particular disease. The judge, having heard the evidence, concluded that 'the prospect of the nucleoside treatment having any benefit is as close to zero as makes no difference. In other words, as I have said, it is futile'.
Any court is bound to feel utmost sympathy for devoted parents who are desperate to explore every possible way of preserving the life of their gravely ill but much loved baby son. As parents we would all want to do the same. And this case is unusual in that the parents are not asking the hospital to provide or continue treatment at public expense. It is the hospital which has asked for permission to withdraw artificial ventilation and provide only palliative care. Charlie's parents are asking that the hospital continue to keep Charlie alive by artificial means until they can take him to the United States for the treatment which has been offered there and for which they have raised the funds to pay. How, they argue, can the hospital try to prevent them from transferring the care of their son to another team?
However, as judges, and not as parents, we are concerned only with the legal position. We are bound to accept the factual findings of the trial judge, who has heard the evidence, including the evidence of the doctor in the USA who is prepared to offer treatment, and the judge found that further treatment would be futile. The legal test which he applied was whether further treatment would be in Charlie's best interests and in his order he expressly found that it would not be.
The parents argue that this is not the right legal test. In this sort of case the hospital can only interfere in the decision taken by the parents if the child is otherwise likely to suffer significant harm. But that apart, it is argued, decisions taken by parents who agree with one another are non-justiciable. Parents and parents alone are the judges of their child's best interests. Any other approach would be an unjustifiable interference with their status as parents and their rights under Article 8 of the European Convention on Human Rights. But there are several answers to this argument.
Firstly, applications such as this are provided for by statute: the Children Act of 1989. There was an application for a specific issue order in this case, as well as under the inherent jurisdiction of the High Court. Both are governed by the same principles. Section 1, sub-section 1 of the Children Act 1989 provides that the welfare of the child shall be the paramount consideration in any question concerning the upbringing of the child in any proceedings. This provision reflects but is stronger than Article 3.1 of the United Nations Convention on the Rights of the Child, which says that in any official action concerning the child, the child's best interests shall be a primary consideration.
Furthermore, where there is a significant dispute about a child's best interests the child himself must have an independent voice in that dispute. It cannot be left to the parents alone. This has happened in this case because Charlie has been represented by a guardian.
That guardian has investigated the case in his best interests and the guardian agrees with the hospital and with the judge's decision.
So, parents are not entitled to insist upon treatment by anyone which is not in their child's best interests. Furthermore, although a child can only be compulsorily removed from home if he is likely to suffer significant harm, the significant harm requirement does not apply to hospitals asking for guidance as to what treatment is and is not in the best interests of their patients. As the Court of Appeal found, it is in any event likely that Charlie will suffer significant harm if his present suffering is prolonged without any realistic prospect of improvement. This was found by reference to the judge's conclusions on the evidence.
Finally, the European Court of Human Rights has firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child's rights must be the paramount consideration. If there is any conflict between them the child's interests must prevail.
In short, therefore, it is quite clear that the hospital was entitled to bring these proceedings, and the judge was required to determine the outcome of these proceedings. In doing so, he applied the right test and his factual findings cannot be challenged on appeal. It follows, that the proposed appeal does not raise an arguable point of law of general public importance and so permission to appeal must be refused.




Questions

1.
According to the Section 1, sub-section 1 of the UK Children Act 1989, it provides that “the welfare of the child shall be the paramount consideration in any question concerning the upbringing of the child in any proceedings”.

Based on the clause, how do you think the UK Supreme Court’s decision on refusing parents’ appeal, to say, life support would be withdrawn from Charlie? Are the conclusion and reasoning court reached applied the UK law justifiable to you? Why or why not? If this happens in Taiwan, how do you view the judgment? A dinosaur judgment?

2.
In your opinion, who would have a right, parents or the court’s decision by law, to decide a terminally ill infant whether to die or to continue futile treatment, particularly when the infant cannot speak for himself/herself? To take away life support conforms a child best interest? What could be Charlie's best interests considered in this case according to your opinion? Which of them should be considered as superior status while others could be regarded as posterior? Why?


3.
Withdrawing life support is based on the judgment for “children’s best interests” in this case.

Here are some simulation tasks.--What does the “best interest for child’ mean to you in following scenarios?

(1)A typical example is in child custody case (particular in parent divorce). The thinking points primarily lie on the child’s want, parent’s financial condition, a main care taker, gender issue, affectionate bond, siblings and family connection, family member’s physical or mental backup, blood tie, and etc.

(2)Assuming that, your best friend died of leaving a great number of heritage, approximately estimated, USD$ 1000B. As a best friend, you were powered to be as his only underage (up to 18 years old) child’s guardian by statute which means you have to use the money and guard this child for his “best interest”. Simulate the following circumstances he may request for money from you, what would you do?

a. To buy a Mercedes-Benz C450 AMG($4000 thousand up) as a daily use vehicle, for safety concern.

b. To buy a $3B house in downtown Taipei for private life space and individual living liking.

c. To annually donate $20M to a charity which sponsors orphans globally particularly on education things.

d. To travel around the world for self explore, $50M as an estimated cost, across one year

e. To hire maids and a housekeeper, 3M, per year

f. To open up an enterprise, as a founder, 1B.

g. To invest on stock, bond, or financial derivatives, 1B.

h. Monthly allowance for 1M

i. To pay erotic-related expenses or gambling debts, 5M


4.
Some parents potentially hold an attitude, "children are certain form of parents' asset", therefore from time to time, by news report, we have heard due to worries for no motherhood or care afterward performed on kids, a depressed and desperate mom murdered her kids before committing suicide. What do you view these things and their attitude/offense? Any possibility in moral viewpoint, if the attempt from a mom to murder is out of true love or deep affection, the culprit would be understandingly pardoned and less morally condemned in your view?

5.
Do you agree or disagree euthanasia (mercy killing) by law imposed on patients with incurable diseases such as cancer? Why or why not? If you agree euthanasia, do you think it shall be limited by law only being applied to patients with incurable diseases, or just to openly grant full respect to an individual and give him/her 100% freedom to pursue for death in an euthanasia way?

6.
Pursuing for futile medical treatment or dying with dignity in an euthanasia way, which one would you prefer your children to do on you in such a dilemma if one day you may be unconsciously and incurably ill and need them to make such a decision for you?

Have you ever talked this issue with your parents, children or siblings for how to do when one day your children may need to make a decision for you, or you need to do so for your parents or siblings? Do you or your family regard it as a taboo topic for discussing? Why?











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最後由 VickyWu 於 週五 8月 18, 2017 5:23 pm 編輯,總共編輯了 7 次。
VickyWu
Member
 
文章: 3
註冊時間: 週五 8月 04, 2017 12:08 pm

Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章Luis Ko » 週四 8月 17, 2017 1:28 pm

i was so surprised Vicky would host a meeting so soon, and i'm surprised she chooses this really serious and controversial topic as her first hosting haa~ great topic really~ like Rock said, let's fight!! looking forward to seeing you guys fighting in the meeting lo~ 8)
i might be a cynic and, a sceptic as well but, i'm definitely not a bad person!!
Luis Ko
YOYO member
 
文章: 772
註冊時間: 週三 6月 06, 2007 10:18 pm

Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章Tina Sun » 週四 8月 17, 2017 2:56 pm

Though being a Mom already, I vote for the hospital. :cccry:
Tina Sun
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註冊時間: 週三 10月 02, 2013 3:23 pm

Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章VickyWu » 週四 8月 17, 2017 4:23 pm

Luis Ko 寫:i was so surprised Vicky would host a meeting so soon, and i'm surprised she chooses this really serious and controversial topic as her first hosting haa~ great topic really~ like Rock said, let's fight!! looking forward to seeing you guys fighting in the meeting lo~ 8)



Luis, I'd rather to be a listener then. Not joining the fight. But I'm quite looking forward to learning in a different angle from each fighter of you guys! See you Sat.
VickyWu
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註冊時間: 週五 8月 04, 2017 12:08 pm

Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章VickyWu » 週四 8月 17, 2017 4:27 pm

Tina Sun 寫:Though being a Mom already, I vote for the hospital. :cccry:



Hi Tina, I know the sad feeling. Life is short and bitter. Can't help to go back right away and give a big hug to kids.:)
VickyWu
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註冊時間: 週五 8月 04, 2017 12:08 pm

Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章Rock » 週四 8月 17, 2017 10:24 pm

For question 6, if I were in an incurable coma, please don't take me back. I cannot bear to say good-bye to Saint Peter at the pearl gate just because of some stupid medical treatments. When it's time, it's time.
In matters of style, swim with the current; in matters of principle, stand like a rock.
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Rock
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Re: 8/19 Sat.Baby Charlie Gard dies after life support withd

文章Luis Ko » 週五 8月 18, 2017 1:32 pm

Rock 寫:For question 6, if I were in an incurable coma, please don't take me back. I cannot bear to say good-bye to Saint Peter at the pearl gate just because of some stupid medical treatments. When it's time, it's time.



yes, same here. actually i do have an idea to talk about a similar topic, right to die, for my future hosting, if there's one haa~

The right to die video I want to share,
https://youtu.be/I3Z7-5qr3eE

By the way, not just because this topic is great to discuss, but also are the questions really worth you guys coming lo.. I would say 8)
i might be a cynic and, a sceptic as well but, i'm definitely not a bad person!!
Luis Ko
YOYO member
 
文章: 772
註冊時間: 週三 6月 06, 2007 10:18 pm

Re: 8/19Sat.Life support withdrawn, babyCharlie dies(host:Vi

文章Kooper » 週六 8月 19, 2017 10:59 am

I started reading through all the material a bit too late. Hopefully I can summon up enough energy (it is challenging after a demanding week's work) and organize my thoughts in time...

Anyway, thank you for picking a great topic Vicky and see you later. :ssmile:
Kooper
Ex-President
 
文章: 2290
註冊時間: 週三 4月 11, 2007 11:40 pm

Re: 8/19Sat.Life support withdrawn, babyCharlie dies(host:Vi

文章Kooper » 週六 8月 19, 2017 2:14 pm

I found the verdict surprisingly non-controversial to me. It is clear to me that the decision made by the London hospital and all the judges involved was in the infant’s best interest.

In this case all the medical teams, including the one treated the infant Charlie, the ones giving second opinions and the US doctor, whose therapy was viewed by Charlie’s parents as a last resort, agreed unanimously that any further medical treatments, especially invasive ones, were pointless. Also everybody, including Charlie’s parents, agreed that it made no sense to sustain Charlie’s life if his medical condition could not be improved. Not to mention that the new therapy had never been trialed in humans and animals with the same disease as Charlie. The parents however turned a deaf ear to the professional opinions and objective truth and groundlessly “believed” that the new therapy could be the magic bullet.

It goes without saying that children’s interests outweigh parents’ rights whenever there is a conflict between them. Children and infants are special for being fragile both mentally and physically. They are particularly vulnerable to hurt or damages made by parents. As such, in the name of protecting children there has been a clear trend these years for judicial system or administration to step between parents and kids when needed.
Kooper
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Re: 8/19Sat.Life support withdrawn, babyCharlie dies(host:Vi

文章Rock » 週日 8月 20, 2017 10:34 pm

Vicky's first hosting; we couldn't stop but kept on talking. Many thanks to the attendees: David, Stephen, Howard, Robert, Tina Sun, Jason, Luis, Kooper, Vicky (host), Julian, Rock.
In matters of style, swim with the current; in matters of principle, stand like a rock.
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Rock
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