Tag: diagnosis

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Jump-Starting Hard Conversations As The End Nears

July 25, 2017

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Bannon had difficult end-of-life-care conversations with his parents, both in their mid-80s, before his mother’s diagnosis. During those  discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.

“That helped so much, because you knew at least one thing was going to be taken care of,” said Bannon, 65, of San Francisco, whose mother survived and lives with Bannon’s father in Wethersfield, Conn.

Most Americans avoid end-of-life decisions, although some people may be more likely to make them if a doctor or social worker starts the discussion. In California, the state’s attorney general’s office offers an end-of-life planning checklist on its website. In the past few years, other websites have encouraged those conversations, with their own suggestions on how to get started.

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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.

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How Kids See the World Depends a Lot on Genetics

Caption: Child watches video while researchers track his eye movements.
Credit: Washington University School of Medicine, St. Louis

From the time we are born, most of us humans closely watch the world around us, paying special attention to people’s faces and expressions. Now, for the first time, an NIH-funded team has shown that the ways in which children look at faces and many other things are strongly influenced by the genes they’ve inherited from their parents.

The findings come from experiments that tracked the eye movements of toddlers watching videos of other kids or adult caregivers. The experiments showed that identical twins—who share the same genes and the same home environment—spend almost precisely the same proportion of time looking at faces, even when watching different videos. And when identical twins watched the same video, they tended to look at the same thing at almost exactly the same time! In contrast, fraternal twins—who shared the same home environment, but, on average, shared just half of their genes—had patterns of eye movement that were far less similar.

Interestingly, the researchers also found that the visual behaviors most affected in children with autism spectrum disorder (ASD)—attention to another person’s eyes and mouth—were those that also appeared to be the most heavily influenced by genetics. The discovery makes an important connection between two well-known features of ASD: a strong hereditary component and poor eye contact with other people.

The new study was led by Warren Jones, Emory University School of Medicine, Atlanta, and John Constantino, Washington University School of Medicine, St.

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.

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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.

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Wong v. Glendale Adventist – Family Alleges Clinicians Deceived Them into Following Advance Directive

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision. Since Hoh’s condition was neither incurable nor irreversible, her advance directive was not relevant.

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision.

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.

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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.

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Revising the Ethical Framework for Deep Brain Stimulation for Treatment-Resistant Depression

By Somnath Das

Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 

Despite the prevalence of therapeutics for treating depression, approximately 20% of patients fail to respond to multiple treatments such as antidepressants, cognitive-behavioral therapy, and electroconvulsive therapy (Fava, 2003). Zeroing on an effective treatment of “Treatment-Resistant Depression” (TRD) has been the focus of physicians and scientists. Dr. Helen Mayberg’s groundbreaking paper on Deep Brain Stimulation (DBS) demonstrates that electrical modulation an area of the brain called subgenual cingulate resulted in a “sustained remission of depression in four of six (TRD) patients” These patients experienced feelings that were described as “lifting a void,” or “a sudden calmness.” (Mayberg et al. 2005). The importance of this treatment lies in the fact participants who received DBS for TRD (DBS-TRD) often have no other treatment avenues, and thus Mayberg’s findings paved the way for DBS to have great treatment potential for severely disabling depression. 

Image courtesy of Wikimedia Commons
Because DBS involves the implantation of electrodes into the brain, Dr. Mayberg and other DBS researchers faced intense scrutiny following publication of their initial findings regarding the ethics of using what to some seems like a dramatic intervention for TRD.

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.

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Speculation, Certainty and the Diagnostic Illusory: The Tricorder and the Deathless Man by Thierry Jutel

In the paragraphs which follow, we will be discussing the ways in which two pieces of speculative fiction, the science fiction film Star Trek IV: The Voyage Home, and the novel The Tiger’s Wife use diagnostic and prognostic certainty as part of their creative narratives. In both cases, the confidence vested in the diagnosis and its outcome is contrasted to the “diagnostic illusory” of contemporary medicine.

Even while diagnosis is medicine’s primary classification tool, it is far less circumscribed than diagnostic taxonomies suggest, as well as the power afforded those who diagnose. Even very material conditions have porous boundaries (Jutel 2013) which muddy the waters in a system that is based on tidy categories. Sarah Nettleton and her colleagues have developed the term “diagnostic illusory” to describe how medicine invests in generalisation as a way of understanding disease. In the diagnostic illusory, for the cases that resists classification, or perturb a diagnostic category, one turns to ever-more sophisticated forms of technology, with the belief that it’s just a matter of time before the explanation will become clear, and the diagnosis justified. Nettleton and her colleagues raise the idea of “illusory” to highlight the “ambiguities and nuanced complexities associated with the biomedical imperative to name and classify” (Nettleton, Kitzinger, and Kitzinger 2014).

In this short essay, we will explore how two speculative texts represent diagnosis, highlighting through their respectively futuristic and supernatural approaches the yearnings of contemporary medicine, and the society it serves, for diagnostic certainty.

 

Star Trek IV: The Voyage Home and the Tricorder

In the science fiction epic Star Trek IV: The Voyage Home (Nimoy 1986), the Starship Enterprise and its crew have come back to planet earth in 1986 to save the humpback whale from extinction and by extension, to save planet earth from destruction in the future.

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.

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Jahi McMath – Evidence that She Is Now Alive Considered by Court Today

Later today (California time), is a hearing on the Motion for Summary Adjudication of Plaintiff Jahi McMath’s First Cause of Action for Personal Injuries, filed jointly by all defendants (“Defendants”) on March 23, 2017.


Judge Stephen Pulido has posted his tentative ruling. I have pasted that below.   



Defendants and for Plaintiffs McMath et al. (“Plaintiffs”) shall be prepared to address, among other things, the following: 



(1) The supporting and opposition papers are “heavy” on discussion of the various medical diagnoses and opinions but “light” on discussion of the applicable legal standards for the court to apply. For example, though Defendants include a collateral estoppel argument, there is only one paragraph addressing it on the last page of Defendants’ memorandum, with a single case cite as to the general application of collateral estoppel, and this issue is not identified in the Notice of Motion. Is this a separate basis of the motion, and if so, have Defendants given proper notice of this? Which facts in the Separate Statement of Undisputed Material Facts (“UMF”), if any, are material to this issue? 



(2) The Notice of Motion states that the motion “is made on the grounds that Jahi McMath lacks standing to sue for personal injuries because she was pronounced deceased in accord with California law in December 2013. The undisputed material facts establish that no mistakes were made in the determination of McMath’s brain death in December 2013, and the diagnosis of McMath’s brain death was made in accord with the accepted medical standards required by California law.”

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.

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Diagnostic dilemmas: When potentially transient preexisting diagnoses confer chronic harm

By Elaine Walker
Elaine Walker is the Charles Howard Candler Professor of Psychology and Neuroscience at Emory University.   She leads a research laboratory that is funded by the National Institute of Mental Health (NIMH) to study risk factors for psychosis and other serious mental illnesses.  Her research is focused on the behavioral and neuromaturational changes that precede psychotic disorders.   She has published over 300 scientific articles and 6 books. 
The diagnostic process can be complicated by many factors. Most of these factors reflect limitations in our scientific understanding of the nature and course of disorders. But in the current US healthcare climate, legislative proposals concerning insurance coverage for preexisting conditions add another layer of complexity to the diagnostic process. It is a layer of complexity that is riddled with ethical dilemmas which are especially salient in the field of mental health care. The following discussion addresses the interplay between medical practice and health-care system policy in the diagnostic process. The diagnosis of psychiatric disorders is emphasized because they present unique challenges [1]. 

Of course, some of the complications associated with diagnosis are a function of ambiguous and/or changing diagnostic criteria. For example, the criteria for designating the level of symptom severity that crosses the boundary into clinical disorder change over time as a function of scientific advances. This has occurred for numerous illnesses, including metabolic, cardiovascular, and psychiatric disorders [2]. Further, especially in psychiatry, diagnostic categories undergo revision over time, even to the extent that some behavioral “syndromes” previously considered an illness have been eliminated from diagnostic taxonomies.

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.

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Transferring Embryos with Genetic Anomalies

Jackie Leach Scully argues that respect for equality and diversity, and not just respect for the parental autonomy and the welfare of the future child, should inform policies governing the use of preimplantation genetic diagnosis.

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The Ethics Committee of the American Society for Reproductive Medicine recently published an Opinion on “Transferring embryos with genetic anomalies detected in preimplantation testing.” The Opinion aims to help providers deal with the rare but ethically difficult situation when prospective parents want to transfer embryos with a known genetic anomaly that is linked to a serious health-affecting disorder.

Preimplantation genetic diagnosis (PGD) is typically used by couples to avoid transferring a genetic anomaly to their children. Using PGD to ensure the transfer of a genetic anomaly, rather than avoid it, seems deeply counter-intuitive. Yet, there are several scenarios where this might happen. For example, this might be a reasonable option when the only transferable embryos carry the genetic anomaly, or when the embryos carry a different, but potentially just as serious, genetic variation.

The most problematic cases, however, occur when prospective parents express an actual preference for children with ‘their’ genetic condition – an anomalous condition that others perceive in negative terms. It’s an uncommon situation, but despite its rarity steps have been taken to block attempts by prospective parents to ‘choose disability’, such as the UK’s legislation on reproductive medicine. The legislation prohibits the use of an embryo (or gamete, in the case of egg and sperm donation) that has a genetic anomaly “involving a significant risk” of “a serious physical or mental disability, serious illness, or a serious medical condition” unless there are no other unaffected embryos or gametes that could be used instead.

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.