Charlie Gard Case: Interpretive Issues and Moral Dilemmas

This essay discusses the Charlie Gard case, including a case summary, interpretive issues, interpretations of the judge, and identification of moral issues. It also explores the moral theory supporting the court's decision.

Running head: ESSAY 0
law system of justice
JULY 17, 2018
Student details:

ESSAY 1
PART 1
Case summary-
In the case Great Ormond Street Hospital v Constance Yates, Chris Gard, Charles
Gard1, a baby boy was born in London. The infant boy had rare inherent disorder,
mitochondrial DNA depletion syndrome (MDDS). The mitochondrial DNA depletion
syndrome causes brain damage and failure of the muscles. There is no treatment of
mitochondrial DNA depletion syndrome and it causes death in infancy. This Charlie Gard
case converted debated because of disagreement of consultant team and parents on the
question whether new treatment was in best interest of infant. In October 2016, baby was
referred to Great Ormond Street Hospital (GOSH), a National Health Service (NHS)
children’s hospital because of failure of thrive and low breathing. There Charlie was kept on
ventilation and mitochondrial DNA depletion syndrome was identified2.
The neurologist, Michio Hirano and Great Ormond Street Hospital decided to
continue with the treatment to be directed in Great Ormond Street Hospital. Michio Hirano
was requested to examine Charlie but Hirano did not come. Mr Hirano visited the hospital
after having brain damage by Charlie. The hospital formed an opinion that more treatment
may extend pain. The hospital discussed with parents for terminating the life support and
rendering comforting caution. However, parents wanted more experimental treatment. In
February 2017, Great Ormond Street Hospital took the permission of high court to overrule
the decision of parents of Charlie. Further parents made appeal to the Court of Appeal3. The
court of appeal rejected the application made by parents of Charlie Gard. Later, Charlie’s
parents made application in Supreme Court. The Supreme Court also rejected the application,
and then they made appeal to the European Court of Human Rights. The judgement of the
1 11 April 2017 [2017] EWHC 972 (Fam)
2 Robert Truog, the United Kingdom sets limits on experimental treatments: the case of Charlie Gard (United
Kingdom: LexisNexis Butterworths, 2017)
3 Charle Arthur, (2017). “Charlie Gard: The facts” [Online]. Available: https://reaction.life/charlie-gard-facts/.

ESSAY 2
court was upheld at the each stage. The Great Ormond Street Hospital applied to the high
court for a new trial4.
On the second hearing, Mr Michio Hirano came to hospital to examine the condition
of Charlie. Mr Michio Hirano said that it is not possible to continue experimental treatment
because it is too late. The parents got ready to terminating the life support. The position of
Charlie was maintained by Great Ormond Street Hospital. The condition of Charlie was
weakened by January. The second hearing was conducted to examine the new evidences.
Charlie Gard was transferred to hospice and ventilation was withdrawn. The next day,
Charlie expired at the age of eleven months and twenty-four days5.
Interpretive issues of the case-
There are some specific interpretive issues of the Charlie Gard case. The first issue
was whether the choosing of an independent representative for infant baby Charlie Gard was
not justified or this practice was not known to other authorities. The second issue was
whether the decision of life-sustaining treatment was not in the best interest of infant Charlie
Gard. The third major issue of case was right nature of the announcements made and the part
of the test of best interest. The other issue of this case was coverage of best interest of the
patient. The main reason for such interpretative issue was that the best interest of Charlie
Gard was decided by various courts6.
Interpretations of the judge-
In April 2017, Charlie Gard case first came before the Francis J. On the question of
whether it will be in the best interest of Charlie Gard to have the experimental treatment or
4 Gred Dressler, Ethical implications of medical crowd funding: the case of Charlie Gard (Australia: pearson
Australia, 2018)
5 Neil John, The long struggle (Cambridge: Cambridge University Press, 2015)
6 Dominic Wilkinson and Julian Savulescu, After Charlie Gard: ethically ensuring access to innovative
treatment (Cambridge: Cambridge University press, 2017)

ESSAY 3
nucleoside treatment, Francis concluded that it would not be in the best interest of Charlie. It
is required to follow that it is legal and in the favour of Charlie Gard to withdraw the artificial
ventilation. It is legal and in the best interest of Charlie for his handling clinicians to give him
with comforting caution only. It is legal and in the best interest of Charlie to avoid
experimental treatment or nucleoside therapy7.
Further, on the rejection of appeal made by parents of Charlie, the case was presented
to Court of Appeal. The court of appeal rejected the appeal made by parents. The court of
appeal also denied the permission to make an appeal to Supreme Court. Parents of Charlie
made an application to the Supreme Court. The Supreme Court rejected the application.
Later, Charlie’s parents made an appeal to the European Court of Human Rights. The
European Court of Human Rights made the application of parents disallowed8.
Furthermore, the second hearing was prompted by a declaration of availability of new
evidences in respect of treatment of Charlie Gard. The decisions refer to multi-disciplinary
conference was held on 17 July 20179. At the conference, the opinion was made that there
were need of scan to determine the position of Charlie that maintained was accurate by the
Great Ormond Street Hospital. The MRI scan stated that infant had weakened to the stage
where Charlie was beyond help. The parents of Charlie withdrew their disapproval to
announcement. It had been concluded by Francis J that the parents are required to face the
truth that the situation of Charlie cannot improve10. It is in the best interest of Charlie to let
him die. Francis said that it is very sad to confirm the statement made in April and now
formally doing so. It was confirmed by Francis J that applications made by Great Ormond
7 David Sullivan, The ethics of the Charlie Gard case (Oxford: Oxford university press, 2017)
8 Dominic Wilkinson, Beyond resources: declining parental requests for futile treatment (Cambridge:
Cambridge University Press, 2017)
9 PMC, (2017). “The Charlie Gard case: British and American approaches to court resolution of disputes over
medical decision” [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5712473/.
10 Brain Cummings, The medical remedies: Charlie Gard case (United Kingdom: Thompson Advantage Books,
2017)

ESSAY 4
Street Hospital were directed by the welfare principle preserved in section 1 of the Children
Act 198911.
It is required by the court to consider the best interest of Charlie Gard. The Francis J
had the opportunity to convict the non-availability to the parents of permissible assistance
and as at first instance to suggest the availability of the deliberation being a method by which
disagreements may be conducted in the future. Francis J made an opinion that parents are
required to know that they cannot done anything for their children out of their capacity. They
should accept that they cannot save the life of Charlie Gard. The only remedy is to let the
Charlie Gard die. On the application of Gosh, Francis J made a declaration that it is not legal
and not in the best interest of Charlie to be kept on the artificial ventilation12. It is also not in
the best interest of the Charlie Gard to continue the experimental treatment or nucleoside
therapy. Francis J made a view that deliberation must be attempted in all the cases so they
both the parties of the case may understand the matters and position of each other13.
How should judge has interpreted the issues?
The case of Charlie Gard was heart-breaking case. Charlie Gard suffered from genetic
disorder and the brain damage. The management of hospital wanted to terminate the life
support. However, the parents of Charlie Gard did not agree to finish the lifetime support.
They want to continue the experimental treatment in the United States. It was held by the
court that it is not in the best interest of Charlie Gard. Charlie Gard should be allowed to die.
This judgement of honourable judge Francis J may be good. However, it is not correct
to reject the rights of parent to treat an infant more by the experimental treatment. Central to
the law as it relates to the medical cure of incapacitous patients in England and Wales is the
11 The Children Act 1989
12 Denil Sokol, Charlie Gard Case: an ethicist in the courtroom (Australia: Pearson Australia, 2017)
13 Julian Savulescu, Is it in Charlie Gard’s best interest to die (Oxford: Oxford University Press, 2017)

ESSAY 5
requirement to make sure that any such treatment is the best interest of patient. It may appear
unfair that parents of Charlie Gard are not permitted to make choices about his dealing. It is a
consequence of wider system targeted at making sure that it is the interest of patients and not
other’s interest, which command whether caution is provided. It is required solid proof that to
do so would cause him harm. There were chances of further experimental treatment or an
alternative treatment for Charlie Gard. The Charlie Gard case focuses on the issue of
describing the best interest for Charlie and trying to determine it by the court system.
The judge is required to recognise the problem in knowing what establishes the best
interest and be specifically careful about permitting the death. The judge was to make focus
on the point of parental autonomy and right to decide on the behalf of their children. It was
also required by the court to use the interpretation about the meditation. The judge or doctor
cannot take terminate the life of someone. They have no right to take the life of someone.
Charlie Gard had to keep with support life until infant expired due to his disease or sickness.
The court might consider the point that whether doctors are the right people to decide what
establishes quality of life. It was required by the court to think over the point that whether
they are too much depend on the opinion of doctors made on the condition of Charlie Gard.
The judge was required to ask for advanced care plan to give the better treatment to Charlie
Gard14.
PART 2
Identification of moral issues of case-
In some cases where death approaches knocking at the door of life, conditions arise
that are tough to give decision and even less simple to decide. From the moral point of view,
many facets are exist which are required to be estimated.
14 John Lantos, The tragic case of Charlie Gard (London: Pearson Education Limited, 2017)

ESSAY 6
The main moral issue was the desires of the parents, which must come first. Children
are not considered as property. They are human being. They have their own individual rights.
It is thinking of parents that they have right on their child. They think they can treat the
children and matters of children as they wish. However, in United States, United Kingdom
and some other places, if parents did not agree to give treatment or blood transfusion, then the
doctors can take the necessary steps to save the life of children. The doctors can force for
more treatment, therapy, or injections. Ethically the desires and welfare of children come first
instead of desires of parents15. In the situation where the doctors or medical consultants and
the parents of children do not agree on the same topic or matter, then the issue may refer to
the court. The court assigns a guardian for determine the best interest of the children. The
appointed guardian will be responsible to decide the welfare of the children. The
representations are required to be made by the parents and the doctors or medical consultants.
The guardian makes efforts to consider the arguments. The guardian submits the report to the
magistrate. The magistrate gives instructions on the legality of actions, directed by the
guardian16.
The second moral issue of the case was children’s right to life. Under the Human
Rights Act, every person has right to life. The article 3 states that no person shall get tortured.
No one is subject to inhuman or humiliating behaviour or sentences. It is the violation of
rights of article 3 to terminate the life of Charlie without giving the treatment or caution or
comforting care. The question was arise that every person has right to live but not if allowing
the children alive is a miasma of suffering that is not possible to clarify. The other moral
issue was action of hospital. The waited too long for the treatment of Charlie Gard. The
treatment of infant was possible at earlier stage. The neurologist, Mr Michio Hirano did not
15 Andrew G Harmon, (2017). “The case for Charlie Gard” [Online]. Available:
https://imagejournal.org/2017/07/11/case-charlie-gard/
16 Clare Dyer, Law, ethics and emotion: The Charlie Gard case (London: Sweet & Maxwell, 2017)

ESSAY 7
came to examine Charli Gard at early stage17. Mr Hirano came to hospital to examine Charlie
after having the brain damage. It was the moral duty of Gosh to force the neurologist to come
on early basis to examine Charlie18.
As morality administers the private and individual interactions and law administers
the society as completely dealing with communication between total strangers. Ethical
problems such as this search their method to higher scopes of the court unexpectedly rarely,
given the situations. Legal cases are still fewer than the medical cases they are constructed.
This case of Charlie Gard was unique. The above-discussed issues are based upon value and
beliefs of an infant. They cannot be considered as legal issues19.
The moral theory supporting the decision of court-
The case of Charlie raised the question that what is the moral status of parents and
what is the moral status of the children in front of public. The Charlie Gard case was
speciously depend on grounds of welfare. However, not all the aspects of the case are
constant with the advancement of welfare of Charlie. There is a solid harmony in the medical
and ethical literature in the United States, which is best interest of the patient, not the wishes
of parents of children or desires of family of children or the personal partialities or
preferences of doctors. This moral theory does not depend on parental autonomy or an effort
to decide the desires of the patient. This moral theory of best interest depends on the concern
for health and benefit of patient20.
The legal decision for Charlie Gard was depend upon the assessment of the best
interest of the Charlie Gard. This safety is significant in respect of infants and children
17 Wesle J Smith, Culture of death: the age of do harm medicine (United Kingdom: Edward Elgar publishing,
2016)
18 David Hirsch, Consent to medical treatment in cases of legal incapacity lessons from the Charlie Gard case
(London: Bloomsbury Publishing, 2018)
19 Peter Singer, Practical Ethics (Cambridge: Cambridge university press, 2011)
20 John Paris, Approaches to parental demand for non-established medical treatment (London: Pearson
Education Limited, 2018)

ESSAY 8
because they are depended on their parents. The children are under the control of their parents
and family but as a patient, children have their personal rights. The consequences are that
parents may continue to be included in the choices made by their children. They do not have
complete right to decline or to want the medical treatment for their children. It is in the best
interest of children. The objective of medical treatment decisions made on the behalf of
children. The central moral issue in the case is whether it will be best to render the new
further treatment and continue concentrated care for Charlie Gard for some months more or
to withdraw the artificial ventilation and permit the Charlie to die. This question raised that
what will be risks and benefits of such two options21.
Francis J gave the judgement to withdraw the artificial ventilation and let the Charli
die because Charlie Gard would suffer and experience pain and disquiet from continuous
caution. There was no surety that Charlie Gard would have advantage from the nucleoside
treatment. It was also argued on the issue of this case that it was not sure that continued
artificial ventilation in severe care is so terrible a life, which it would not be worth living. The
doctors thought that it would not correct to continue to keep the Charlie Gard on the artificial
ventilation. In this tragic case of Charlie, the judges in the court of appeal will seek the
judgement that all the magistrates or majority of magistrates, think is accurate. Based on
ethics, it is suggested that if the children are not so able to express their desires or wishes,
then preferences should be given to the welfare of children. The benefit of children was the
key factor of the courts. This moral theory of best interest supported the judgement given by
the Francis J. The best interest standard is considered as an objective standard. When the
values and beliefs of patients are not identical, the best interest is appropriate standard. The
best interest standard is normally specified as reasonable person standard. This approach of
21 John C Bester, Charlie Gard and the limits of the harm principle (Sydney: Ventura press, 2018)

ESSAY 9
court focused on the weakness of an infant because an infant can never say enough is
enough22.
The suggested moral theory, which should be adopted by court-
It was not so easy for Francis to give the judgement in this case. It was quite
confusing what is right or what is wrong for Charlie Gard, parents, and his family. The
different moral theories to the children and parents made the claims. Francis J adopted the
moral theory of best interest of infant. As per the above discussion, Francis J gave the
judgement that Charlie Gard should not keep on artificial and ventilation. The judge permits
the Charlie to die because it is in the best interest of Charlie Gard.
Many arguments raised on this case that parents of children have rights to make the
decisions about the parents so that they can advance the children’s welfare. The judges were
required to consider the moral theory of parental autonomy and reflective equilibrium. The
further arguments recommended that children are the parental property. It is called as
proprietarian accounts. The parents of children have basic right to choose the option for their
children. The parenting has teleological base. The parenting is considered as good in itself.
The Personhood is a procedure of unique ethically significant and ethically less significant.
On the point of personhood, the person is not an ethically relevant property. The parent’s
choice should have given priority. The desires of parents should come first. It is a duty of
parents to decide what will be the best for welfare of the children. The judges were required
to consider the moral theory of parental autonomy and reflective equilibrium.
The moral theory of reflective equilibrium states that it is not necessary that all the
judges, doctors, and medical consultants are expert in specific matters. However, it is
required that the judges, doctors and medical consultants should have proper knowledge
22 Hugo Lagercrantz, observations on the case of Charlie Gard (Australia: CCH Australia Limited, 2018)

ESSAY 10
about the related aspects. They should have broad mind. They are required to find issues and
their solutions. The magistrates, doctors and other relevant consultants should apply logical
methods to solve issues. They should have kind knowledge of these particular human rights.
They are required to know the situation and handle the issues or matters in proper way. The
judges must consider the sentimental of parents and family. The judge was required to know
more about the advanced care treatment for the children. The court was required to take
necessary steps to find out the alternatives for an infant so that Charlie Gard might survive. It
was not required by the judge to depend only on the opinions of neurologists and doctors.
They all were required to make more efforts until Charlie Gard die. This approach states that
infant should not die. There must be chance of alternative treatment23.
Bibliography
A. Articles/ Books/ Reports
Bester, J. C. Charlie Gard and the limits of the harm principle. Sydney: Ventura press, 2018.
Cummings, B. The medical remedies: Charlie Gard case. United Kingdom: Thompson
Advantage Books, 2017.
Dressler, G. Ethical implications of medical crowd funding: the case of Charlie Gard.
Australia: Pearson Australia, 2018.
Dyer, C. Law, ethics and emotion: The Charlie Gard case. London: Sweet & Maxwell,
2017.
23 Carle Zimmerman, Family and civilization (Cambridge: Cambridge university press, 2014)

ESSAY 11
Hirsch, D. Consent to medical treatment in cases of legal incapacity lessons from the Charlie
Gard case. London: Bloomsbury Publishing, 2018.
John, N. The long struggle. Cambridge: Cambridge University Press, 2015.
Lagercrantz, H. observations on the case of Charlie Gard. Australia: CCH Australia Limited,
2018.
Lantos, J. The tragic case of Charlie Gard. London: Pearson Education Limited, 2017.
Paris, J. Approaches to parental demand for non-established medical treatment. London:
Pearson Education Limited, 2018.
Savulescu, J. Is it in Charlie Gard’s best interest to die. Oxford: Oxford University Press,
2017.
Singer, P. Practical Ethics. Cambridge: Cambridge university press, 2011.
Smith, W. J. Culture of death: the age of do harm medicine. United Kingdom: Edward Elgar
publishing, 2016.
Sokol, D. Charlie Gard Case: an ethicist in the courtroom. Australia: Pearson Australia,
2017.
Sullivan, D. The ethics of the Charlie Gard case. Oxford: Oxford university press, 2017.
Truog, R. D. The United Kingdom sets limits on experimental treatments: the case of Charlie
Gard. United Kingdoms: LexisNexis Butterworths, 2017.
Wilkinson, D. and Savulescu, J. After Charlie Gard: ethically ensuring access to innovative
treatment. Cambridge: Cambridge University press, 2017.
Wilkinson, D. Beyond resources: declining parental requests for futile treatment. Cambridge:
Cambridge University Press, 2017.

ESSAY 12
Zimmerman, C. Family and civilization. Cambridge: Cambridge university press, 2014.
B. Cases
Great Ormond Street Hospital v Constance Yates, Chris Gard, Charles Gard, 11 April 2017
[2017] EWHC 972 (Fam)
C. Legislations
The Children Act 1989
D. Other
Arthur, C. (2017). “Charlie Gard: The facts,” [Online]. https://reaction.life/charlie-gard-
facts/.
Harmon, A. G. (2017). “The case for Charlie Gard,” [Online].
https://imagejournal.org/2017/07/11/case-charlie-gard/.
PMC. (2017). “The Charlie Gard case: British and American approaches to court resolution
of disputes over medical decision,” [Online].
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5712473/.