Tag: evaluation

Bioethics News

Palliative care in Latin America. Patients who require this treatment do not have access to it

Palliative is a patient right 

Since its introduction in the 1980s, palliative care has been evolving gradually in Latin America. There are currently 922 services in 19 countries. This corresponds to 1.63 services per million inhabitants, so most patients in the region who require this treatment do not have access to it.

The Atlas of Palliative Care in Latin America stresses that the development of palliative care in Latin America has been very slow and fragmented.  Thus, it ranges from 16.06 services per million inhabitants in Costa Rica down to 0.24 in Honduras. Chile has the highest absolute number of services (277), while 46% are located in Argentina and Chile, accounting for 10% of the entire Latin American population. This confirms that governments must adopt the public policies and measures necessary to guarantee that the needs of the entire population are met. North America and Europe countries are also far away from patients’ needs (Vida Universitaria. University of Navarra. 21-III-2014).

WHO evaluation of the increasing of palliative care need (see HERE)

The need for palliative care has never been greater and is increasing at a
rapid pace due to the world’s ageing population and increases in cancer
and other noncommunicable diseases. Despite this need, palliative care
is underdeveloped in most of the world, and outside North America,
Europe and Australia, access to quality palliative care is very rare.
Palliative care is expanding in the developed world in spite of myths and
misunderstanding about its nature and purpose, but is only beginning to
be available in the developing world where it is needed most.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Fake News and Partisan Epistemology

by Regina Rini

ABSTRACT. This paper does four things: (1) It provides an analysis of the concept ‘fake news.’ (2) It identifies distinctive epistemic features of social media testimony. (3) It argues that partisanship-in-testimony-reception is not always epistemically vicious; in fact some forms of partisanship are consistent with individual epistemic virtue. (4) It argues that a solution to the problem of fake news will require changes to institutions, such as social media platforms, not just to individual epistemic practices.

Did you know that Hillary Clinton sold weapons to ISIS? Or that Mike Pence called Michelle Obama “the most vulgar First Lady we’ve ever had”? No, you didn’t know these things. You couldn’t know them, because these claims are false.[1] But many American voters believed them.

One of the most distinctive features of the 2016 campaign was the rise of “fake news,” factually false claims circulated on social media, usually via channels of partisan camaraderie. Media analysts and social scientists are still debating what role fake news played in Trump’s victory.[2] But whether or not it drove the outcome, fake news certainly affected the choices of some individual voters.

Why were people willing to believe easily dis-confirmable, often ridiculous, stories? In this paper I will suggest the following answer: people believe fake news because they acquire it through social media sharing, which is a peculiar sort of testimony. Social media sharing has features that reduce audience willingness to think critically or check facts. This effect is amplified when the testifier and audience share a partisan orientation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Specter of Authoritarianism

by Andrew J. Pierce

ABSTRACT. In this essay, I provide an analysis of the much-discussed authoritarian aspects of Donald Trump’s campaign and early administration. Drawing from both philosophical analyses of authoritarianism and recent work in social science, I focus on three elements of authoritarianism in particular: the authoritarian predispositions of Trump supporters, the scapegoating of racial minorities as a means of redirecting economic anxiety, and the administration’s strategic use of misinformation. While I offer no ultimate prediction as to whether a Trump administration will collapse into authoritarianism, I do identify key developments that would represent moves in that direction.

The unorthodox campaign and unexpected election of Donald Trump has ignited intense speculation about the possibility of an authoritarian turn in American politics. In some ways, this is not surprising. The divisive political climate in the United States is fertile soil for the demonization of political opponents. George W. Bush was regularly characterized as an authoritarian by his left opposition, as was Barack Obama by his own detractors. Yet in Trump’s case, echoes of earlier forms of authoritarianism, from his xenophobic brand of nationalism and reliance on a near mythological revisionist history, to his vilification of the press and seemingly strategic use of falsehoods, appear too numerous to ignore. In this essay, I attempt to provide a sober evaluation of the authoritarian prospects of a Trump administration. As presidential agendas inevitably differ from campaign platforms, much of this analysis will be unavoidably speculative. However, the nature of Trump’s carefully studied campaign, the early actions of his administration, and the wealth of philosophical reflections on earlier forms of authoritarianism provide ample resources to inform such speculation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Brain Death – 3rd Edition by Wijdicks

This third edition introduces new research in the intensive care unit, newly unearthed historical data on important US-UK differences, a thorough discussion of US guidelines and how it is used in hospital practices, and compares guidelines used elsewhere in the world. In this incisive work, the many complexities of diagnosis and management of brain death are examined but it also illuminates cultural beliefs and bioethical problems, highlights the nature of conferences with family members, and captures several organ procurement issues. The book also includes 30 commonly asked practice problems to resolve diagnostic uncertainties and conflicts along with 12 video clips to assist in neurological evaluation.  

Chapter 1: History of Brain Death

A New Comatose State Appears

Defining Neurologic Criteria for Death in Us

Chapter 2: Neurology of Brain Death

The Pathology of Brain Death

Clinical Examination in Adults

The Clinical Determination of Brain Death in Children

Documentation

Teaching Brain Death Determination

Errors and Alleged Recoveries

Legal Definitions and Obligations

Chapter 3: International Criteria of Brain Death

Guidelines in the United Kingdom

Guidelines World Wide

Consensus for a Uniform World Wide Standard

Chapter 4: Beliefs About Brain Death

Religious Beliefs

Cultural Views

Religious Conflict Resolution

Chapter 5: Critics and Brain Death

The Uncertainty of Death

Emerging Controversies

Critique

Chapter 6: Procurement After Brain Death 

Transitioning to Organ Donation

Organ Procurement Organizations

Organ Donation Requests

Preparation for Determining Organ Suitability

Donation Protocols

Medical Management of the Organ Donor

Chapter 7: Clinical Problems in Brain Death and Organ Donation

1. The Qualifications of the Examiner

2. Clinical Mimics

3.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Study Finds Memory Recognition Technology to be Effective Tool for Jurors in Evaluating Defendants

Published in the Journal of Law and the Biosciences, a report on “The Limited Effect of Electroencephalography Memory Recognition Evidence on Assessments of Defendant Credibility” suggests that American jurors can properly apply the results from brain-based memory recognition technology used on criminal defendants in order to fairly assess the defendants’ testimonies. As summarized by ScienceDaily, the research measured “the effect of neuroscientific evidence on subjects’ evaluation of a fictional criminal fact pattern,” though it also discovered “that the neuroscientific evidence was not as powerful a predictor as the overall strength of the case in determining outcomes.”

“The technology measures the electrical brain activity of defendants and witnesses, and should improve the legal system’s ability to determine who is telling the truth and who is not… Our new interdisciplinary research is exciting because it’s some of the first to empirically test how this would work in practice,” lead author of the study Francis Shen told ScienceDaily. The University of Minnesota law professor and director of its Neurolaw Lab conducted two separate experiments of online and in-person subjects.  “One day, it could become commonplace in justice investigations. However, we need more studies like this and more collaboration across disciplines before we can be confident that this type of evidence should be used in real legal cases.”

Research on the impact of brain-based memory recognition technology – as evidence of a testimony’s reliability or lack thereof in the courtroom – has been researched by scientific and legal scholars alike over the past twenty years. Hope in its potential to better the legal system now appears closer to being realized.

 

The post Study Finds Memory Recognition Technology to be Effective Tool for Jurors in Evaluating Defendants appeared first on Global Bioethics Initiative (GBI).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Burke and Wills: Why We Might All Fear the Judgment in Charlie Gard

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

My Sister’s Keeper: An Assessment of Living Organ Donation among Minors

by Alex Fleming

The 2009 film My Sister’s Keeper, based on Jodi Picoult’s 2004 New York Times bestselling novel which bears the same name, is among other things, a controversial story about a young girl (Anna Fitzgerald) who sues her own parents in order to obtain legal rights to the use of her body. For as long as she can remember, Anna has unwillingly been providing blood and bone marrow to her older and critically ill sister, Kate. As the story unfolds, tension within the family arises as the 13 year-old Anna Fitzgerald becomes fully aware of her reason for existence, so to speak, which is to prevent the death of her older sister by providing a regular supply of blood and bone marrow, which she has done regularly for several years. Later on, as Kate’s condition worsens and her renal function begins to fail, the parents naturally turn to Anna to provide what could be a life-saving kidney transplant for her older sister. The climax of the story begins as Anna confidently and heroically refuses. The story raises a slew of bioethical issues which are beyond the scope of this essay; however, the story sheds light on a topic worthy of discussion: living organ donation among minors.

As the supply of organs suitable for transplantation decreases and the demand for them increases, the question of living organ donation among those yet of age has become a question of greater concern, primarily among those who point to the various ethical implications which such a procedure creates.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Tumor Scanner Promises Fast 3D Imaging of Biopsies

Caption: University of Washington team that developed new light-sheet microscope (center) includes (l-r) Jonathan Liu, Adam Glaser, Larry True, Nicholas Reder, and Ye Chen.
Credit: Mark Stone/University of Washington

After surgically removing a tumor from a cancer patient, doctors like to send off some of the tissue for evaluation by a pathologist to get a better idea of whether the margins are cancer free and to guide further treatment decisions. But for technical reasons, completing the pathology report can take days, much to the frustration of patients and their families. Sometimes the results even require an additional surgical procedure.

Now, NIH-funded researchers have developed a groundbreaking new microscope to help perform the pathology in minutes, not days. How’s that possible? The device works like a scanner for tissues, using a thin sheet of light to capture a series of thin cross sections within a tumor specimen without having to section it with a knife, as is done with conventional pathology. The rapidly acquired 2D “optical sections” are processed by a computer that assembles them into a high-resolution 3D image for immediate analysis.

The microscope was developed in the engineering lab of Jonathan Liu at University of Washington, Seattle. Liu got the idea after receiving an email from Nicholas Reder, a medical resident in the university’s pathology department. Reder noted that when pathologists examine a tumor specimen under a conventional analog microscope, they must first prepare the sample. That involves the laborious process of taking a thick piece of tissue, slicing it into smaller pieces for embedding in wax before cutting them again into a few paper-thin sections suitable for mounting on traditional glass slides.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.