Tag: suffering

Bioethics Blogs

Texas Considers Letting Doctors Lie to Patients

by Craig Klugman, Ph.D.

The Texas Senate just passed a new bill (SB 25) that would shield doctors from a lawsuit if a baby is born with a disability even if the doctor knew of the concern and chose not to tell the parents. Opponents of the bill say that it permits doctors to lie to their patients if the doctor believes that knowledge might lead the woman to choose an abortion. The Houston Chronicle reports the bill’s aim is to “chip away at abortion rights.”

The Texas law does not go as far as a 2015 Arizona law that mandated physicians lie to patients by telling them that an abortion can be reversed. The new Texas bill would “allow” doctors to lie to patients and shield them from lawsuit unless the patient could prove gross negligence. The burden is on the patient to prove that the doctor should not have lied.

One of the first rules of professionalism that I teach in undergraduate and medical school bioethics courses is that in general, you never lie to the patient. Telling the truth is a bedrock concept necessary to respect patient autonomy. In order to make decisions, patients need to have knowledge of their condition and their treatment options (risks, benefits, and alternatives).

There are a few circumstances in which lying to patients is ethically acceptable: If the physician has strong reasons to believe that information would push the patient to do harm to him/herself or others, or if the family has requested that a patient not be told information because of cultural practices and the patient has agreed that she/he does not want to know the news.

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

The Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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

Moving Toward Answers in ME/CFS

Thinkstock/Katarzyna Bialasiewicz

Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.

Unfortunately, this is not fiction, but reality for at least a million Americans—who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.

A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS. A recent study of metabolite pathways in blood samples from people with ME/CFS reported a signature suggestive of a hypometabolic condition, similar to a phenomenon biologists have studied in other organisms and refer to by the term “dauer” (a hibernation-like state) [5].

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 significance of 37

January 30, 2017

The significance of 37

Ana Krivokuca,

MSc in Molecular Biology, PhD in Genetics

Masters in Bioethics, Clarkson University &Icahn School of Medicine at Mount Sinai (exp. June 2017)

It’s a boy! Such a familiar statement but with somewhat peculiar and mysterious echo on the morning of 29th September, 2016. While drinking my first coffee of the day, I am wondering what is so unique about this boy to put him in the headlines of CNN, The Washington Post, The New York Times, The Guardian and every other -post or -times that exist around the world . Aha! ˝World’s first baby born with new ‘three parent’ technique. Ok, this requires a larger cup of coffee….

Even though many believe that all of our genes reside in the nuclei of our cells, it’s more complicated than that. A small part of human genome (only 37 genes compared to an estimated 20,000-25,000 genes in the whole genome) is situated outside the nucleus, in the “energy factories” of the cells called mitochondria. Mutations in one of these 37 genes might cause mitochondria failure, cell damage, and even cell death. Mitochondrial diseases are usually progressive; they manifest differently and affect those parts of the body that have highest energy demands: brain, muscles or heart. These tiny pieces of DNA are inherited only from our mothers. So, each of us inherited these 37 genes from our mother, who inherited them from hers, and so on and so forth through generations.

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

De-stigmatization of the disgraceful mark of stigma in the opioid crisis

 

After attending Albany Government
Law Review’s symposium,
Script to Street: Opioids
and the Law in the Capital District

this past Thursday, there was several issues addressed but the one overarching
concern was about the role of stigma in this opioid crisis. Many different
types of stigma were identified and the different ways our negative judgments
have impacted society. As one speaker during the first panel discussion stated,
addiction is not a new problem. He described one historic painting that showed
different reactions of society to addiction: disgust, numbness, shock, or
simply ignoring the problem. All of these reactions illustrate stigma and shows
how despite all our social advancements, we still have not eliminated (or destigmatized)
stigma of the addiction problem.
 

 Some definitions of stigma
include a
mark of disgrace, society disapproval of something, or a negative set of beliefs society has about something. 
All definitions include this
perceived negativity and describe stigma as bad. Stigma is not something one
like to face and usually, a judgment one tends to try avoiding.
 

 The issue with stigma our
current opioid crisis is that it is not just one type of stigma, it is layers
of stigma on top of one another. There is the stigma of being a drug user and
the stereotypes of who is a drug user (the poor, African American, Hispanic).
 Drug-users are
perceived to be “bad” people who only care about drugs.  This perception becomes a barrier to
treatment as individuals do not want to seek treatment in fears they will be
labeled as a drug user, even if these individuals are suffering from chronic
pain.

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

An Emerging Public Health Crisis

The Executive Order on Refugees: An Emerging Public Health Crisis

 


March 10, 2017 Update:

 

New in The Lancet: The Revised US Refugee Ban, Health, and Security, Leonard Rubenstein and Paul Spiegel

“The new order suspending and then shrinking the refugee resettlement programme does not bring any security gains and imposes tremendous mental and physical harm on people who have suffered more than most of us can even imagine. Let them in.”

 


February 21, 2017 Update:

 

Ethics, Refugees, and the President’s Executive Order, Nancy Kass, ScD

“The values emblematic of our country are often thought to include deep commitments to individual liberties and to entrepreneurship, but also empathy for others, care for the sick, and broad interests –regardless of how we get there– in lifting the tide for all. Mogens Lykketoft, former UN General Assembly President said, “The genuine loss and pain these people are suffering should be unbearable for all of us.

This sentiment should exemplify our common morality.”

 


 

The Executive Order on Refugees: An Emerging Public Health Crisis

 

Please note, due to technical difficulties with sound recording, the first few minutes lack audio, audio begins at 4:15.


 

via Johns Hopkins HUB

 

The Johns Hopkins University Bloomberg School of Public Health hosted a symposium examining the consequences of President Donald Trump’s executive order suspending the U.S. refugee admission program.

 

The symposium, “The Executive Order on Refugees: An Emerging Public Health Crisis,” took place in the Bloomberg School’s Sommer Hall on JHU’s East Baltimore campus and was cosponsored by the Johns Hopkins Berman Institute of Bioethics.

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

“Assisted Suicide: The Musical”

The Wall Street Journal’s weekend edition for March 4-5, 2017 carried a “Saturday interview” (subscription required) with one Liz Carr, the creator and, I gather, star of a stage production in London called “Assisted Suicide: The Musical.”  In the article, we read that it received a standing ovation from a full house, but the show’s website shows a one-night-only run.

The 46 year-old Ms. Carr is described as suffering from “a genetic disorder that prevents her from extending her muscles, among other impairments.”  She worries that the assisted suicide movement is benefiting from repeating “the right to die” like a “mantra.”  In the play, she plays a character called “Documentary Liz,” who, accompanied by “manipulative” music, is presented to the public as a pitiful character who really is trapped by life and would be better off dead.

Ms. Carr further comments that assisted suicide advocates hide behind two ideas: dignity—which is understood to depend on health, so that ill or disabled persons somehow lack it unless they end their lives—and self-determination, a term cruelly misused.  “Legalizing euthanasia doesn’t empower you,” she says.  “It empowers doctors.”  Her WSJ interviewer adds: “In the context of the modern welfare state, that means empowering agents of the government.”

She mocks the term used by assisted suicide proponents—“dignicide,” intended to denote death with dignity—as the denial of human dignity.

She argues that assisted suicide is not about autonomy, but about fear of death, something we don’t talk about any more in an irreligious society.  “I say this as an atheist,” she adds.

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

Another Way to Cut MedMal Damages?

To limit liability and increase predictability, scholars and policymakers have long focused on capping damages awards.  In particular, they have been worried that there are many runaway jury awards for non-economic damages (i.e., pain and suffering).  Because these are not … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & bioethics.

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

Assisted Suicide Heads to Colorado

By: Tyler Cosmer

While the outcome of our recent election cycle have represented a country with polarized viewpoints of America’s future policies, one ballot initiative has emerged as a force of consensus. Voters in Colorado overwhelmingly passed Proposition 106 with a clear 64.6% in favor to 35.4% not in favor.[1]  Proposition 106, more commonly known as the “End of Life Options Act,” now gives eligibility for self-administered aid-in-dying medication to terminally ill Coloradans, provided they only have six months or less to live and that they are mentally competent.[2]  Colorado is now the sixth in the United States to sanction physician-assisted suicide for terminally ill citizens, joining Oregon, Washington, California, Montana, and Vermont.[3]  This vote is pivotal for Colorado, marking the latest opportunity for public reflection and debate centered upon how we think about the end of life.

Medical error is the third leading cause of death, behind heart disease and cancer.[11] Opponents to Proposition 106 cite the possible scenario in which an individual is given access to end of life medication, and prematurely ends their life when they might have been able to overcome their prognosis.  Yet, as access to physician-assisted suicide continues to grow, richer data sets regarding impacts of the practice have become available. A 2007 inquiry on how physician-assisted suicide impacts vulnerable populations found no evidence of heightened risks in end of life decision-making in Oregon and in the Netherlands.[12]  

Proposition 106 borrows heavily upon Oregon’s pioneering Death with Dignity Act of 1997.[4]  Similar to Oregon’s Act, Colorado’s version indicates that the request to receive life-ending medication must be the sole initiative of the patient.

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 End Of The Affordable Care Act and Its Critics’ Hollow Moral Rhetoric

From the 1940’s to the present, it’s hard to think of a
major topic on the American political agenda that has been subjected to more
tortured language and ideological extremism than healthcare. By no means am I
saying that healthcare proposals to expand access to healthcare over the years
should not have been subjected to rational scrutiny and disagreement. But it
seems, by and large, disagreement over healthcare policy proposals have always
been about the opponents of progressive options to expand insurance coverage
tapping into a certain segment of voters’ deepest fears and biases to
predispose them against any alternative for change.

All progressive leaders who have attempted reform in
healthcare, like Earl Warren (Governor of California from 1943-53) and
President Harry Truman (mid-late 1040’s), to President John Kennedy and Lyndon
Johnson in the 1960’s, to the Clintons in the 1990’s, to Barack Obama in 2009,
have been met with fierce opposition from lobbying groups representing big
business, including insurance and pharmaceutical companies, and often physicians
through the American Medical Association. The essential line of attack has been
that government would become overly involved in medical decision-making and
overshadow the influence and judgment of physicians in the care of patients.
But to win this argument decisively, the hired consultants
devised plans
to associate expanded healthcare coverage or universal
healthcare with “socialized medicine” and even the “red scare”—clear demeaning
associations with undemocratic countries, unlike the United States, that
quickly appeal to irrational sentiments and undermine any consensus for reform.
These basic underhand, scare tactics continued to be effective against the
failed Clinton proposal in 1993 and, later, President Obama’s signature
achievement—the Affordable Care Act—which currently in the process of being
repealed and radically scaled down in terms of benefits.

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.