Question

write one to two selective paper using APA format about Charlie Gard study case include all ethical component of ethical decision making outline application of the American Nurse Act code of ethics

Answer 1

Charlie Gard case :

The Charlie Gard case was a best interests case in 2017 involving Charles Matthew William "Charlie" Gard (4 August 2016 – 28 July 2017), an infant boy from London, born with mitochondrial DNA depletion syndrome (MDDS), a rare genetic disorder that causes progressive brain damage and muscle failure. MDDS has no treatment and usually causes death in infancy. The case became controversial because the medical team and parents disagreed about whether experimental treatment was in the best interests of the child.

In October 2016, Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service (NHS) children's hospital, because he was failing to thrive and his breathing was shallow. He was placed on mechanical ventilation and MDDS was diagnosed. A neurologist in New York, Michio Hirano, who was working on an experimental treatment based on nucleoside supplementation with human MDDS patients was contacted. He and GOSH agreed to proceed with the treatment, to be conducted at GOSH and paid for by the NHS. Hirano was invited to come to the hospital to examine Charlie but did not visit at that time. In January, after Charlie had seizures that caused brain damage, GOSH formed the view that further treatment was futile and might prolong suffering. They began discussions with the parents about ending life support and providing palliative care.

Parent's Request for Experimental Treatment :

A key issue in Charlie's case was access to experimental treatment. Requests for access to experimental treatment from patients or their family can sometimes occur when circumstances are dire. In the US the medical establishment handles these requests under "expanded access" or "compassionate use", which examines whether there is a reasonable chance of more benefit than harm for the patient; the extent of need; fairness; and the resources of everyone involved, including the people providing and administering the drug. US insurance companies generally do not pay for experimental treatment.[91] In Charlie's case, the GOSH medical team initially decided to try the experimental treatment which would have been funded by the NHS, had it gone ahead.

The question was whether it was in Charlie's best interests to receive nucleoside therapy – whether the benefits were likely to outweigh the harm. Because the therapy was unproven, and had never been tested on a patient with Charlie's condition, the GOSH medical team and the courts focused on whether it was plausible that there could be of any benefit. Hirano told the court that having seen 30 March EEG, the damage to Charlie's brain was more severe than he had thought.He said in his evidence that the treatment was unlikely to be of any benefit to Charlie's brain. He agreed that there could be no reversal of the structure of Charlie's brain. He said that the main functioning would be improvement of weakness; some patients had improved their upper strength and four of eight patients had been able to reduce their time on ventilators, but he agreed that the effect on brain function would be less or minimal or non-existent. He said that the chances of meaningful brain recovery would be small, he described the probability as low, but not zero; he agreed he could not distinguish from vanishingly small. He said that he thought that there was only a small chance of meaningful brain function. He said that he was in uncharted territory, "especially as we do not know how much structural damage there has been". He conceded that to a large extent, if not altogether, the damage was irreversible. GOSH had determined that the chances of benefit to Charlie were vanishingly small, the effort would be futile and the treatment potentially painful for him.
Hospitals in the US make the same kind of plausibility analysis when they consider experimental treatment. New York–Presbyterian Hospital would have needed approval to give Charlie the nucleoside therapy under the US compassionate-use framework. Charlie's parents felt any chance to save his life was worth trying. Their attempt to take Charlie to New York began when the London Hospital did not obtain approval to administer the experimental treatment – there was no question of its medical or technical inability to administer the treatment. Had Charlie travelled to New York a similar regulatory process would have been required. This point was not raised within the court process; the case proceeded, both in court and in the wider public debate, on the basis that the experimental treatment was not available in London but was available in New York. In evidence in April Hirano had said that he would defer to "ICU people", i.e he would not administer the experimental treatment if the intensivists at his hospital advised against it, as the GOSH ethics committee had in November 2016 and intensivists at GOSH had in January 2016.

After Charlie's death, The New York Times observed that only rarely is there such intense conflict between doctors and parents. CAFCASS reports that in England, it was involved in 18 parent-doctor disputes in 2016 that ended up in court. Hospitals discussed existing methods that have proved effective for avoiding disputes over children's care.

Medical ethics :

American Nurse Act code of ethics and Some medical ethicists saw the use of social media in this case as a challenge for their profession. Charlie's parents used social media to gain public support, but the medical team was limited in what it could say due to confidentiality obligations, and public opinion had no place in its decisions or procedures.During the court proceedings the ethical approaches to experimental treatment in the US and UK were compared in the media.Case law in the US has tended to favour families' perception of what is in their relative's best interests. Doctors in the US are less inclined to go to court when there are disagreements, but may find themselves providing care or treatment they believe is unethical. Some state law strongly favours families, but Texas, for example, allows doctors to bring cases to an ethics committee if they believe a treatment is futile, and they can be released from the obligation to provide such treatment.

Public and ethicist's commentary continued as the case progressed through the courts. The public commentary changed little. Apart from the political comments about socialised medicine, single-payer health systems etc., the majority of public comment concentrated on the rights of the parents to make the medical choices for their child; on what was seen as the usurping nature of the court case. There were many claims that the court decisions were ordering or sanctioning euthanasia. The commentary of ethicists tended to change as the court process progressed.

Ethical Components:

Some ethicists said or implied either that the parents and the doctors should have agreed or that it was regrettable that they had not agreed or that they surely would have agreed had neither side had access to lawyers. Professor Julian Savulescu, Uehiro Professor of Practical Ethics at the University of Oxford, and Professor Dominic Wilkinson, Director of Medical Ethics at the Oxford Uehiro Centre for Practical Ethics and Consultant neonatologist at the John Radcliffe Hospital in Oxford opined that it is necessary for a court to decide the issues in circumstances of disagreement between the parents and the doctors if the disagreement is unreasonable but if the disagreement is reasonable the parents' decisions should prevail. Richard Doerflinger, former Associate Director of Pro-Life Activities of the U.S. Conference of Catholic Bishops, views it differently; "Catholic documents say the patient is the primary decision-maker; then loved ones who can speak for the patient; then doctors. These documents seldom mention judges. ... The American tradition reflects Catholic teaching. This conflicts with the statements issued in Rome by Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, and the two statements issued in London by the catholic Bishops' Conference of England and Wales but Doerflinger certainly reflects the American tradition. Both the Holy See and the United Kingdom are parties to the United Nations Convention on the Rights of the Child. The United States is a signatory but remains the only member state not to have ratified the convention. Its disinclination to do so is characterised in a U.S. Senate Resolution of 10 March 2011.

Wilkinson argued that the dominant legal approach in the US is unreasonable. "It either assumes that parents are infallible and always make the best decisions for their child. Or it assumes that children are the property of their parents, who may make whatever decisions they like about them." Wilkinson also argued that the disagreement in this case between the doctors and the parents was unreasonable and argued that the doctors and the courts were right to withheld the experimental treatment. Savulescu argued that the disagreement was reasonable and that the parents' decision should have prevailed.

Raanan Gillon, Emeritus Professor of medical ethics at Imperial College London, President of the Institute of Medical Ethics, had argued similarly on the BBC radio Programme The Moral Maze on 12 July.[108] Wilkinson also appeared on that programme, which was broadcast on the evening before the second evidential hearing at the High Court. Gillon said that the court was susceptible to ethical criticism and that in his opinion it had made the wrong decision. He argued that many children were being kept alive by artificial ventilation and that the accompanying pain and discomfort, which could be ameliorated, was not sufficient reason to override the parents right to decide. Wilkinson was more circumspect. He declined to say whether he thought the court had been right or wrong – he did not believe that he knew sufficient of the medical facts and he doubted that anyone other than those involved in the case did either. He drew on his regular working experience in a paediatric intensive care unit and stressed the need for doctors to listen to parents, to work to understand their views and to retain the trust of parents. Wilkinson stressed the continual worry that practitioners in his field had about the balance between the pain of treatment against its possible or potential benefits. He stressed that ventilation and suction were painful intrusive procedures.

The majority of these opinions were promulgated before the second evidential hearing in the High Court or before the full judgement was published.

Differences between British and American approaches :

Owing to differences in their health-care systems, inclination to litigiousness, and a greater sense of a common community, fewer disputes are brought to the courts in the United Kingdom than in the United States. When cases do make their way to court, the British courts view issues not from the perspective of patient or family ‘autonomy,’ but the ‘best interests’ of the patient.

Another major difference in the systems is payment for litigation. The ‘contingency fee’ approach used in civil cases in the United States allows individuals who believe they were unjustifiably injured in the medical context to seek legal assistance for one-third of any future payment for the claim. There are no immediate ‘out of pocket’ costs for initiating a law suit. Seeking a legal remedy for a perceived injury in the United Kingdom is a more expensive proposition. Significant ‘out of pocket’ costs are a disincentive to seeking a court remedy for a complaint though means-tested legal aid is available to families in these cases.

Finally, the unitary court structure in the United Kingdom promotes a greater consistency in judicial rulings than is found in the United States. In the United Kingdom once a higher court promulgates a way to proceed and established a standard to be followed, lower courts tend to conform. In the United States, the multiplicity of jurisdictions established under the Constitution precludes such a unified legal system.

Conclusion :

The UK Court system—although not perfect and subject to the problems that plague all attempts at judicial resolution on dispute over medical treatment—in its timeliness, consistency and attention to what matters most (the interests of the child) provides a model of how the judicial system should respond to family–physician conflicts over treatments for seriously ill children.

Given Mr Justice Francis’ careful analysis in the Gard case, the thoroughness of his research and his faithfulness to the guidelines provided by higher courts on resolving family–physician conflicts on treatment decisions, it is no surprise that his ruling in the Gard case—heartbreaking as it was —was unanimously upheld by the Court of Appeal and the UK Supreme Court. On 27 June 2017, the European court of human rights rejected the parents’ appeal, closing the final avenue of appeal.