Tag: patients

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 It is expected that life support will be withdrawn in the days ahead.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 News

Striking a Balance

By Peter Young

 

In April of this year, the Berman Institute and Johns Hopkins Hospital Ethics Committee held its monthly Ethics for Lunch case presentation focusing on how to manage patients who make racist, sexist, and otherwise offensive comments. The discussion, moderated by Dr. Joseph Carrese, featured panelists who have experienced racism/sexism in the clinic, and it allowed audience to gain insight from their perspectives.

 

During the discussion, there was mention that minority patients in an in-patient setting cannot choose their own doctor based solely on race, because Hopkins’ practice is to pair the best doctor with a patient’s medical needs. I was a bit confused how minority patients not being able to choose race-based concordance in an in-patient setting fits into the larger, nation-wide conversation of minority groups wanting safe spaces. For example, some argue the race of the physician affects the quality of care, and when the provider and patient’s race align, the provider can speak better to certain beliefs, religious practices, nutritional knowledge, and cultural norms. Also, there may be even subtler, yet equally important benefits of having your provider look like you, especially in our current political climate. This includes patient-compliance as well as the potential for less polarizing power dynamics in the provider-patient relationship.

 

Scholars like Dr. Dayna Bowen Matthew, author of Just Medicine and professor at University of Colorado, might argue that if a white, middle-class person tells an intercity, minority person to take their medication, that patient may be less likely to adhere.

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

ASBH Lifetime Achievement Awards & Cornerstone Awards – Bioethics and Medical Humanities

Lifetime Achievement Awards

ASBH announces two Lifetime Achievement Awards for longstanding achievement by an individual in bioethics and/or the medical humanities. Both recipients will make remarks at the 2017 ASBH Members’ Meeting and Award Presentations, Friday, October 30, 3:45 pm in Kansas City, MO.

Myra Christopher is recognized as the first leader of the Center for Practical Bioethics (CPB), an applied, real-world bioethics organization emphasizing ethics and action informed by thoughtful reflection, guided by academic discipline. Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.

Steven Miles, MD is honored for three and a half decades of research and education. He has published 6 books and over 160 articles and chapters on a breathtaking array of issues, an extraordinary contribution to bioethics scholarship. His career is also distinguished by the impact of his work beyond academia and his devotion to the reform needed to alleviate suffering, especially in contexts affecting the most vulnerable members of our global society.

Cornerstone Awards

ASBH announces two Cornerstone Awards for enduring contributions by an institution to the fields of bioethics and/or the medical humanities. These awards will be presented at the 2017 ASBH Members’ Meeting and Award Presentations.

For over 25 years, The ANA Center for Ethics and Human Rights has advocated for social justice and the protection of human rights and tirelessly provided ethical guidance, both theoretical and practical, at the state, national, and international levels.

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

Press Release – “The Worst Outcome” Prof Dominic Wilkinson

This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.

This is the worst possible outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.

There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.

We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.

We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.

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

When a doctor calls a patient a racial slur, who is hurt?

by Keisha Ray, Ph.D.

Last week Lexi Carter, a black woman from Tennessee had an experience that so many other black people have had, a racially charged visit with a doctor. When Carter walked into her doctor’s office, Dr. James Turner greeted her with “Hi Aunt Jemima.” During the visit, he proceeded to call her Aunt Jemima more than once. Carter’s encounter with Dr. Turner is problematic for many reasons: 1. The term “Aunt Jemima,” which is the name of a popular syrup and pancake mix whose packaging depicts the face of a black woman, has a long history of racism dating back to the late 1800s; 2. Dr. Turner made these remarks in front a physician assistant trainee and a student who are still learning about the field of medicine; 3. After admitting to making the remark, Dr. Turner said that the term “was not intended to show disrespect for Ms. Carter,” calling it a “misspoken blunder.”

Aunt Jemima is a reflection of the “mammy” archetype that can be found in films, television shows, and literature (e.g. Calpurnia in “To Kill a Mocking bird” or Mammie in “Gone with the Wind”). The archetype depicts a larger black woman who is usually wearing an apron over a tattered dress, her hair is usually tied up with a scarf of some sort (typical of black slaves who tied their hair up to help protect from lice). The mammie character is also typically responsible for caring for the homes and children of white slave owners (i.e. house slaves), and who speaks using vernacular typical of uneducated black slaves, a vernacular that is usually mocked for being simple and unrefined unlike that of the vernacular of white people.

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

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

 

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

 

4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

 

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

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

Neuroscience Offers Insights Into the Opioid Epidemic

July 21, 2017

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Most Americans say they’re interested in scientific discoveries, but they may be thinking of the kinds of findings that lead to new gadgets and wonder drugs. When it comes to discoveries about hazards and risks — especially the risks of those wonder drugs — Americans seem more likely to tune out.

Such ambivalence might help explain how opioid misuse became such a problem in America. Despite 20 years of warnings from scientists about the dangers of addiction, the rate of prescriptions has tripled between 1999 and today. It hit a peak around 2012 and has started to decline slightly, going from 81.2 per 100 people to a still-enormous 70.6 per 100, new data show. Indeed, according to the Centers for Disease Control and Prevention, U.S. doctors wrote 259 million prescriptions for potentially addictive painkillers in 2014 — enough for every adult in the country to have a bottle.

All the while, neuroscientists have found that opioids can cause long-term changes in the brain even after an addicted person experiences the severe nausea and other withdrawal symptoms typically associated with quitting. That lingering hazard might have given patients and prescribing physicians pause.

… Read More

Image: By PNAS – doi: 10.1073/pnas.1117206109, CC BY 2.5 br, https://commons.wikimedia.org/w/index.php?curid=18829817

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Source: Bioethics Bulletin by the 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

More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient.  It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control.  Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker.  Under the rubric I’m used to, the parent’s wishes would control.  Here, the British authorities argue, they do not.

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

All the Difference in the World: Gender and the 2016 Election

by Alison Reiheld

ABSTRACT. In this paper, I analyze multiple aspects of how gender norms pervaded the 2016 election, from the way Clinton and Trump announced their presidency to the way masculinity and femininity were policed throughout the election. Examples include Hillary Clinton, Donald Trump, Barack Obama, and Gary Johnson. I also consider how some women who support Trump reacted to allegations about sexual harassment. The difference between running for President as a man and running for President as a woman makes all the difference in the world.

 

IMAGE DESCRIPTION: This image shows Donald Trump on the left and Hillary Clinton on the right. Trump’s eyes are narrowed, his brow furrowed. He looks serious, and there is no hint of a smile. On the right, Clinton has a composed look with a slight, close-mouthed smile, her eyes open to a typical degree. Both are white and have greying blonde hair.

The May 21, 2007 cover of TIME magazine showed a close-up image of Mitt Romney’s face with the cover tagline “. . . he looks like a President . . .”, the first of many such claims. In 2011, as Texas Governor Rick Perry geared up for a run at the presidency, Washington Post opinion writer Richard Cohen said that Perry “actually looks like a President” (Cohen 2011). The term, here, is used as praise. Yet the power of its use as an epithet when people fail to look adequately presidential cannot be understated. During the primaries for the 2016 election, while watching Republican candidate Carly Fiorina, Donald Trump said in front of a reporter, “Look at that face!

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

PCORI Announces New Initiative to Support Shared Decision Making

The Patient-Centered Outcomes Research Institute (PCORI) today announced a new initiative designed to help patients work with their clinicians to choose the healthcare options best suited to their needs.


PCORI’s Board of Governors today authorized up to $6.5 million in initial funding to support efforts to promote wider use of shared decision making strategies. Shared decision making is the process by which clinicians and patients consider available effective treatment options and the comparative evidence for risks and benefits of each, and then work together to choose which might work best for the patients. 


This process is important because even when adequate evidence is available to support the effectiveness of two or more options, individual patients often have unique priorities and preferences that lead them to make different choices.


PCORI has always been committed to promoting shared decision making as a path to improving patient care and outcomes. The institute has made a significant investment in research related to shared decision making strategies and interventions to help patients, caregivers and clinicians work together to consider healthcare options. 


This new initiative is an extension of that effort, focusing on putting into practice tested strategies that incorporate the latest evidence.
“PCORI recognizes that for many clinical situations, patients and clinicians need to work together to consider all available treatment options, informed by the patients’ preferences,” said PCORI Executive Director Joe Selby, MD, MPH. “For a variety of reasons, shared decision making isn’t as widely used in practice as it should be. Figuring out how to address the barriers limiting its use and move these strategies into practice is important to us.”


Under the new program, PCORI will consider applications to implement shared decision making based on the results of completed PCORI-funded projects.

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.