martedì 1 ottobre 2019

MAGISTRALE 1 - MATERIAL

PLEASE DOWNLOAD/ PRINT OFF THE MATERIAL  BELOW IF YOU DID NOT RECEIVE A COPY AT  THE FIRST LESSON


1.      BIOETHICS – A REPORT
You will write a report on the Alfie Evans case which  will then  be followed by an  interpretation of the facts based on a number of sources.
1)       watch  the  video summarizing the course of events of the case and take notes:
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2)      What is your immediate reaction to what  you have seen?
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3)      Read the article below about the Hippocratic Oath.
In  what way has it the oath been  modified recently? Why do  you think  this is? Which  tenets of the oath  are particularly relevant to  the Evans case?
A modern successor to the Hippocratic Oath for physicians around the world has been approved by the World Medical Association. This is the first revision in a decade and reflects changes in the climate of medical ethics.
First of all, the “Declaration of Geneva” is to be called, not an “oath”, but a “pledge”. The most striking change is the emphasis on patient autonomy. A clause has been inserted into the 2017 version which says, “I will respect the autonomy and dignity of my patient”.A somewhat unusual new clause requires doctors to look after their own health: “I will attend to my own health, well-being, and abilities in order to provide care of the highest standard”.There is a new obligation on physicians to share their knowledge for the benefit of their patients and for the advancement of healthcare.
The current Declaration of Geneva is used across the world by physicians. In many countries it is actually part of the medical professional code and in some it is legally binding. However, in other countries it is either not used at all or has been adapted. The revised pledge is supposed to be a global ethical code for all physicians. WMA President Dr Yoshitake Yokokura said:
“The life of physicians today is completely different to what it was in 1948 when the original Declaration of Geneva was adopted. Since then, the Declaration has become a core document of medical ethics and a modern version of the 2,500-year old Hippocratic Oath. We hope that the Declaration approved today will be used by all physicians around the world to strengthen the profession’s determination to maintain the highest standard of health care for patients.”
It is interesting to compare the 2017 version with the 1948 version. In many respects they are strikingly different.
1948: I will maintain the utmost respect for human life from the time of conception 
2017: I will maintain the utmost respect for human life.
1948: even under threat, I will not use my medical knowledge contrary to the laws of humanity 
2017: I will not use my medical knowledge to violate human rights and civil liberties, even under threat.
1948: I will maintain by all the means in my power, the honor and the noble traditions of the medical profession; my colleagues will be my brothers
2017: I will foster the honour and noble traditions of the medical profession
AS A MEMBER OF THE MEDICAL PROFESSION:
I SOLEMNLY PLEDGE to dedicate my life to the service of humanity;
THE HEALTH AND WELL-BEING OF MY PATIENT will be my first consideration;
I WILL RESPECT the autonomy and dignity of my patient;
I WILL MAINTAIN the utmost respect for human life;
I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing, or any other factor to intervene between my duty and my patient;
I WILL RESPECT the secrets that are confided in me, even after the patient has died;
I WILL PRACTISE my profession with conscience and dignity and in accordance with good medical practice;
I WILL FOSTER the honour and noble traditions of the medical profession;
I WILL GIVE to my teachers, colleagues, and students the respect and gratitude that is their due;
I WILL SHARE my medical knowledge for the benefit of the patient and the advancement of healthcare;
I WILL ATTEND TO my own health, well-being, and abilities in order to provide care of the highest standard;
I WILL NOT USE my medical knowledge to violate human rights and civil liberties, even under threat;
I MAKE THESE PROMISES solemnly, freely, and upon my honour.



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4)      The Religious and legal Perspectives
Read the article below. Do  you agree with  the American or the European  stance?
Alfie Evans and Christianity
The case of Alfie Evans has resonated with Catholic and Christian communities around the world. They see in his case a fundamental conflict between the actions of the British legal system and their religious belief in both the right to life and the right of parents to determine a child’s medical care. Some religious activists have banded together in support of the Evans family, calling themselves “Alfie’s Army,” and regularly protest outside the hospital where Alfie is being treated.
In response to the outcry from the Catholic community, the Italian government offered young Alfie citizenship, arranging for him to travel to the Bambino Gesu hospital in Italy. Even Pope Francis, who met with Tom Evans in Rome earlier this month, has weighed in on the case.
https://pbs.twimg.com/profile_images/507818066814590976/KNG-IkT9_normal.jpeg

Moved by the prayers and immense solidarity shown little Alfie Evans, I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.

Pope Francis also tweeted out his sadness in response to the news of Evans’ death:
https://pbs.twimg.com/profile_images/507818066814590976/KNG-IkT9_normal.jpeg

I am deeply moved by the death of little Alfie. Today I pray especially for his parents, as God the Father receives him in his tender embrace.
But the swelling of support for Alfie has not changed the British legal system’s mind. On Tuesday (April 24), justice Hayden ruled one final time that the family could not send Alfie to Italy for treatment. Moving Alfie, he said, would only make him more vulnerable to an infection and other dangers, for an outcome that would certainly not help him live any longer.

Who has final say over an infant’s medical care?

Alfie Evans is not the first baby whose medical condition sparked similar debates. Last year, Charlie Gard, a terminally ill British baby, died in July 2017 a day after the British High Court ruled that his life support could be withdrawn. Charlie’s case had attracted the attention of world leaders from Pope Francis to US president Donald Trump.
Extreme medical cases like Alfie Evans and Charlie Gard illustrate the moral dilemma of end-of-life care for sick children. It’s easy to understand why the parents of sick children would cling to hope; as long as their children are alive, they believe, there’s still a chance they might recover. But the British legal system takes the view that, in some cases, keeping children artificially alive only prolongs their suffering.
For outside observers, whether one sides with the parents or the state often falls along national and cultural fault lines. American conservatives are up in arms about Alfie, and many other Americans may well feel the same way. David French recently wrote in the conservative National Review that, because of the “fundamentally religious element to America’s founding,” the legal system would not consider intervening to determine the course of Alfie’s medical care, which would be left up to his family. He argues that Americans innately respect parents’ rights and liberties above the state’s: “Raised against the backdrop of American liberty, there are millions of Americans who understand this reality almost instinctively, without knowing an ounce of constitutional law,” he writes. “Their very spirit rebels against Great Britain’s actions.”
But European legal and political systems are based on the primacy of the state’s authority in extreme situations like a dispute over a child’s end-of-life medical care. That’s partly because European laws are informed by human rights standards laid down in the United Nations Convention on the Rights of the Child, which all European states are party to but the United States is not, as well as other European treaties like the European Convention on Human Rights.
“In Europe, disputes over children’s medical care, including end-of-life medical care, may result in a limitation of parental authority, justified by the protection of the child’s rights and best interests, which includes the right to have one’s dignity and physical integrity protected,” Ton Liefaard, who holds the UNICEF chair in children’s rights at Leiden Law School in The Netherlands, told Quartz.
Europeans themselves, meanwhile, are often divided along religious fault lines. British neonatal ethicist Dominic Wilson offers a view into the thinking behind secular support for the British legal system’s decision, explaining that the goal is not to end Alfie’s life but to provide him with palliative care. “Palliative care is not euthanasia,” he writes in a blog post. “It is about providing ‘intensive caring’ rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us.”
Whether one sides with the law or the rights of parents in this case, it’s impossible not to feel compassion for Alfie’s parents. Writing about Alfie’s father, Tom, in his ruling, justice Hayden laid out his understanding of the issue. “His core dilemma, from which he struggles to escape, is that whilst he recognizes and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope,” Hayden wrote. No parent could blame him.
https://qz.com/1264345/alfie-evans-life-and-death-highlights-the-vast-gap-between-the-us-and-europe-on-right-to-life/



5)      Watch  this biased interpretation of the case. What is the expert’s reasoning based on?


6)      Complete the text below by inserting one word only in the gaps.   Before doing so, read the text through at  least once.
The tragic case of Charlie Gard will be reconsidered by the High Court in London on July 13.  ……………. its first ruling in April, baby Charlie’s plight has attracted international attention,  ……………. comments from the Pope and Donald Trump.
The case is significant for its poignancy and its international profile,   but …………….  legal significance arises from the dispute between Charlie’s parents, Chris Gard and Connie Yates, and his medical team. ……………. dispute includes their opinions on Charlie’s condition and the likely benefits of an experimental medical treatment. ……………. disagreements are uncommon, but when they arise there are a number of reasons why they need an independent arbiter to ……………. the competing issues. Charlie suffers from a rare and debilitating illness called encephalomyopathic mitochondrial DNA depletion syndrome.  ……………. a result of his condition, Charlie has already suffered irreversible brain damage. His parents ……………. to take him to the US for an experimental treatment, called nucleoside therapy but both courts and the doctors at Great Ormond Street Hospital have so far concluded that it ……………. be “futile”.
Charlie’s parents have the legal capacity to consent to the treatment or to the withdrawal of treatment on  ……………. of their child and some would argue that the parents’ view should prevail. But as Lord Justice McFarlane stated in the Court of Appeal:
It is well-recognised that parents in the appalling position that these and other parents can find  ……………. may lose their objectivity and be willing to ‘try anything’, even if, …………….  viewed objectively, their preferred option is not in a child’s best interests.
Equally parents and patients ……………. not be left without the ability to review the expert decisions of medical professionals. In this sense all power ……………. checks and balances even that wielded by those with…………….  but the best of motives. The question ……………. becomes who is best placed to resolve these competing but equally well-intentioned viewpoints?
       Who decides and why?
As justice secretary, David Lidington, recently said, the government has “no role to play” in the resolution of this case. ……………. the UK’s constitutional arrangements, government policy and the law all require that the courts are used to resolve …………….  disputes. No one is above the law and the rule of law itself means that medical decisions are reviewable in the courts. ……………., when doing so, the courts are not asked to find in favour of either the parents or the medical team. ……………. are they asked to consider what they would do as a parent or doctor. While they will consider evidence from ……………. parties, the sole issue for the court is to identify what is in the best interests of the patient.This process ensures that medical opinion is rigorously tested and, where appropriate, it provides legitimacy to the difficult decisions that doctors are called  ……………. to make about life and death.For a liberal democracy it is crucial that all evidence is heard in a public forum that is independent and impartial, subject to an appeals process, and which regards the best interests of the patient as the paramount consideration.
The next hearing
 ……………. far the courts have concluded that it would not be in Charlie’s best interests to undergo the experimental treatment and that it would be in Charlie’s best interests, and therefore lawful, for his life support to be withdrawn. Before the court…………….  change this view, additional evidence would ……………. to be produced that undermined its earlier conclusion that the proposed treatment would be futile. The purpose of the July 13 hearing is to explore ……………. such evidence exists.…………….  the case has been emotionally fraught, evidentially it has been relatively straightforward as all the UK medical experts, including an independent consultant paediatric neurologist instructed by the parents, have agreed that the experimental treatment would have no benefit. Even the US doctor offering to treat Charlie …………….  that the treatment had not been tested on Charlie’s exact condition. Mr Justice Francis summarised his evidence as follows:
While there was reason to be hopeful that the treatment might make a modest difference to life expectancy, it almost certainly could not undo the structural brain damage that had taken ……………..
If fresh evidence is now produced that supports the treatment and that evidence is disputed by the hospital doctors, the judge will have a much harder judgment to …………….. However, in a society that recognises the fundamental importance of the individual citizen and their human rights, it is a task that properly ……………. to the courts and no other.   
                                                                           
 The Conversation , Nicholas Clapham,   School of Law, University of Surrey



7)      Write a report on this case. Begin with  a brief summary of events. Then, using the sources above, write your interpretation of the events  and, in conclusion, judged on what you have read, give your opinion.

Further reading : The Children Act, Ian McEwan


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