Where the World Finds Bioethics Fri, 17 Apr 2015 19:34:37 +0000 en-US hourly 1 Bad Behaviour by Pharma, and Unforeseen Consequences Fri, 17 Apr 2015 14:01:05 +0000 ]]> 0 Current Trends in End-of-Life Medical Treatment (MP3) Fri, 17 Apr 2015 03:25:00 +0000 0 Current Trends in End-of-Life Medical Treatment (MP3) Fri, 17 Apr 2015 03:25:00 +0000 0 Patients without Surrogates – Twitter Chat Fri, 17 Apr 2015 03:13:00 +0000 0 A Drive-By Shot at the Concept of “Liberal Neutrality” Fri, 17 Apr 2015 02:34:53 +0000 Read More »]]> 0 Watch Out for Snack Food Thu, 16 Apr 2015 12:45:47 +0000 People are correctly paying a great deal of attention to just how many calories it is possible to consume at American restaurants these days. The New York Times, in fact, recently showed just how many calories people typically consume at … Continue reading

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Gonzales vs. Oregon Thu, 16 Apr 2015 11:04:03 +0000 0 Are religious research subjects a vulnerable population? Wed, 15 Apr 2015 19:28:11 +0000 by Craig Klugman, Ph.D.

A recent study in the journal Psychology Science found that when people are thinking about God, they are more likely to state a willingness to participate in nonmoral,° risky behaviors such as skydiving, substance abuse, and speeding. To reach their conclusion, the researchers asked online participants to undertake a short writing task. Half of the participants were asked to incorporate words that reminded them of God and half did not.

The participants then took one of several scenario tests where they were asked their willingness to participate in risky behaviors.…

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Bioethics Commission Recommends Creating Guidance About Use of Neural Modifiers to Augment or Enhance Neural Function Wed, 15 Apr 2015 15:50:44 +0000 0 Sex, Consent, and Dementia Wed, 15 Apr 2015 14:54:00 +0000 Bonnie Steinbock]]> 0 National Healthcare Decisions Day Wed, 15 Apr 2015 09:00:00 +0000 0 VSED Podcast on TWIHL Tue, 14 Apr 2015 22:53:00 +0000 0 Is there a “Right to Try” Experimental Drugs? Tue, 14 Apr 2015 21:50:24 +0000 ]]> 0 LIVING WILLS, GREYHOUNDS AND GOALPOSTS Tue, 14 Apr 2015 20:14:00 +0000 National Healthcare Decisions Day – April 16, 2015
By John G. Carney, MEd, President and CEO
Center for Practical Bioethics

For years, I’ve been curious to know whether people fail to complete living wills and avoid naming a healthcare agent out of procrastination or a false sense of confidence that they have plenty of time to do it later.

Reality is, if you don’t do it when you don’t have to, it’s not likely to go well when you do. Naming someone during a time of crisis to speak on your behalf can be downright cruel, especially when you’ve not shared much about the things that are really important to you.

Share What’s Important

What are those things? Well, they aren’t scary or monumental. They include things like how important laughing, talking, sharing and “just being” are to you. Don’t get all tied up in feeding tubes. Instead think about what sharing a meal means to you. Is it a means to an end or an end in itself?

I once shared a house with an older-than-me bachelor and swore when he ate at home he never cooked anything that didn’t come in a box and could go in a microwave. I, on the other hand, started just about every meal sautéing fresh onions and garlic in olive oil. Food had entirely different meanings to us, and that became starkly evident to me when we talked about his dad’s early onset Alzheimer’s and how differently he approached the question of feeding tubes when the difficult question arose in his family.

So stop worrying about a tube in every orifice! Instead think about the sharing what you want more than anything – even at the end. Don’t obsess about completing a living will (aka healthcare directive) to the point that it paralyzes you from acting. Instead, take the time to share with someone who loves and cares for you what’s important to you as you think about life in general and especially its final stages. Focus on the positive - the most fulfilling aspects of your life. This isn’t a “bucket list” of items to do, but rather a sharing of values and convictions. What do relationships, solitude, faith, nature, self-expression and art, work, music and family mean to you?

Then, when that’s all done, ask that person to be your agent. And then promise that person that you’ll do it again in a year or two down the road – or whenever you have a major event in your life – from the birth of a child to the diagnosis of a serious illness. Life happens and, while our wishes and dreams may alter, you’ll be comforted by the fact that values – real bedrock beliefs about life and love – pretty much stay the same. But don’t assume even those close to you know all that.

Recognize Greyhounds and Goalposts

Over the years I’ve learned about two very important syndromes that all of us deal with differently. One is called the “Greyhound Syndrome.” It’s the phenomenon that sometimes we experience a great freedom of anonymity sitting next to a perfect stranger (on a bus traveling cross country) and share our deepest thoughts more freely than we do with those we’ve shared a lifetime with. Hospice volunteers can regale you with stories they’ve heard, never to share again, by a dying patient. These are not necessarily dark secrets of our past so much as unvoiced hidden treasures. Some are worth sharing before we die; others are worth taking to the grave. Think about which is which.

The other syndrome is what’s called “Moving Goal Posts.” This phenomenon deals with how some future state or health condition may appear unacceptable at one point in our lives and much more acceptable at another. That’s why checking boxes and lists on living will forms doesn’t work for people in states of relative good health. But stories, treasured thoughts, values and convictions work at every level.

Have a Caring Conversation Today

So take a leap and share your stories with someone you love. And, this April 16, on National Healthcare Decisions Day, have a caring conversation. Name an agent. Start talking about what matters most and don’t make it a somber depressing discussion. Think about it as a gift to those you love that will lead to peace of mind – for you and them. Because it likely will – far more likely than leaving it to chance. Close to 85% of us will have to rely on someone else to make our final wishes known. 

If you need help getting started, we’ve got a little booklet that will help you do just that. Download a free Caring Conversations workbook or order a printed version from the Center for Practical Bioethics’ website.

Seize the moment and turn what you thought was morbid and ghoulish into the marvelous and glorious. You may just discover something about a loved one that will serve you both in the moment and for a lifetime.
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The Anchoring Heuristic Courtesy of Dilbert Tue, 14 Apr 2015 12:55:13 +0000 Heuristics is jargon used by decision psychologists and behavioral economists to refer to cognitive shortcuts we humans take to make judgments and decisions. One of the first heuristics identified as such by Danny Kahneman and Amos Tversky was the anchoring … Continue reading

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Let’s do a Better Job Educating Everyone Tue, 14 Apr 2015 11:04:00 +0000 0 A Not-So-Open Discussion Tue, 14 Apr 2015 01:36:07 +0000 Read More »]]> 0 (anti)Discrimination Starts in the Womb Mon, 13 Apr 2015 23:22:23 +0000 Read More »]]> 0 Residual Dried Blood and New Born Screening in Minnesota Mon, 13 Apr 2015 16:24:21 +0000 ]]> 0 Gratitude for Rev. Gardner C. Taylor Mon, 13 Apr 2015 14:56:00 +0000 Remembered by Dr. Robert Lee Hill, Senior Minister
Community Christian Church, Kansas City, Missouri
When a comprehensive American religious history of the 20th century is finally compiled, the magisterial preaching eloquence of the Rev. Dr. Gardner C. Taylor will be remembered with astonishment and abiding, awe-struck admiration. Dr. Taylor died on Sunday, April 5. He was 96.

For more than 70 years, Dr. Taylor held forth among African American Baptists and a panoramic array of religious adherents throughout the United States and around the world as an orator with few if any peers.

MLK’s Favorite Preacher

As the pastor of the Concord Baptist Church of Christ in Brooklyn, New York, for 42 years, and afterwards in retirement, Dr. Taylor engaged the issues of his community, the nation and the world with passion, insight and effectiveness. He artfully combined the necessary durative dynamic of transcendence with the equally necessary punctiliar character of incarnation.

With Martin Luther King, Jr., who called Dr. Taylor his “favorite” preacher, he helped found The Progressive National Baptist Church in order for congregations to better address and overcome the ravages of racism and segregation in the U.S. Working from the North, he led the Concord church and many other congregations to raise funds for Dr. King’s efforts in the South.

Dr. Taylor also served on the New York City Board of Education and was always involved in issues that arose in the “public square” of Brooklyn and greater New York. In his later years, Dr. Taylor worried that many religious leaders and their congregations had lost their “prophetic edge” and might fall into the trap of merely mirroring a consumeristic culture.’’

Compassion Sabbath in Kansas City

Whenever he spoke and wherever he travelled, Dr. Taylor dealt with ethical issues and matters of public significance, including when he came to Kansas City.

The Center for Practical Bioethics will remain abidingly thankful for Dr. Taylor’s presence in Kansas City in 1999 at the launching of “Compassion Sabbath,” which engaged more than 80,000 faith community leaders and members in hundreds of congregations in an interfaith initiative to increase the quality of care for those facing the end of life. At a breakfast gathering at Union Station, he spoke compellingly of the need for honesty and compassion in relation to the experience of debilitation and pain at the end of life.

During the time of a sabbatical journey in 2010, I was privileged to share a long interview/conversation with Dr. Taylor in his home in Raleigh, North Carolina. In retirement, Dr. Taylor echoed in his meditations what he put forth as a preacher, pastor, and activist for the betterment of humanity. Well into his 90's, Dr. Taylor spoke plainly and with swift clarity about the process of aging. When asked about what he prayed for, he said his personal prayers were "to get out without too much pain." And he added, with a chuckle, "And I'm ready to get out, I'm ready to go."

People in the pew, the academy of homileticians, and awe-struck fellow clergy regarded Dr. Taylor as a singular personality whose like only comes around once every century or so. We would agree and only add that we’re so glad that he came to Kansas City to share his extraordinary voice for the intertwining for what is “good” and what is “right.”

Note: The Kansas City Star published an article about Dr. Gardner on April 11, 2015, describing his pulpit as “the most prestigious in black Christendom.”]]> 0
How Do Scientists’ Beliefs Differ from Those of Laypeople? Mon, 13 Apr 2015 12:51:03 +0000 Do you think it is safe to eat genetically modified foods? I do, because I believe that most foods we eat have been genetically modified. Cows wouldn’t be cows if humans hadn’t changed them genetically, through breeding practices. That also … Continue reading

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Should a University President Resign over Research Ethics? Sun, 12 Apr 2015 15:35:12 +0000 ]]> 0 What’s the Matter with Indiana? Sun, 12 Apr 2015 14:26:39 +0000 ]]> 0 Limits of Default Surrogate Laws, Importance of Advance Directives Sun, 12 Apr 2015 08:00:00 +0000 0 Ethics of Research on Complementary & Alternative Medicine Sat, 11 Apr 2015 16:24:48 +0000 ]]> 0 Abortion and Children’s Books Sat, 11 Apr 2015 14:00:11 +0000 Read More »]]> 0 Is International Consensus on Brain Death Achievable? Sat, 11 Apr 2015 09:00:00 +0000 Commenting on a new study in NEUROLOGY that shows a wide diversity of brain death practice, James Bernat asks "is international consensus on brain death achievable?"

Bernat observes: "Worldwide concurrence on death determination criteria can enhance public confidence in physicians’ ability to determine death by eliminating the possibility that patients declared dead in one jurisdiction would be considered alive in another. International harmonization also is a constructive step toward improving global systems of organ transplantation."

But, Bernat notes, "formidable medical and societal barriers must be overcome before such consensus becomes possible." 

In addition to other sources of variation results, Bernat notes "disagreement over the conceptual question of whether brain dead patients are truly dead or only “legally dead.” Surveys continue to show both widespread misunderstanding of the brain death concept and its rejection as equivalent to biological death by some health care professionals."

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“Computers Helping Computers Help People Help Computers” Fri, 10 Apr 2015 18:36:43 +0000 Read More »]]> 0 Neither Doctors nor Laypersons Understand Brain Death Fri, 10 Apr 2015 17:33:00 +0000 0 Ethics in the Age of Ebola Fri, 10 Apr 2015 16:30:32 +0000
by Joseph J. Fins, M.D.
It now seems a lifetime ago. The first case of Ebola had come to the Western hemisphere and taken the life of Thomas Eric Duncan at a Dallas, Texas hospital. His death, and other cases in the “developed” world, led to a predictable media deluge, a good bit of hysteria, and predictable political posturing. As the November election approached, fear and ideology took hold, with calls for quarantine and allegations of discrimination coming from predictable precincts.
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Toronto Police Criminally Charge Nurse for Stopping Life Support without Consent Fri, 10 Apr 2015 13:11:00 +0000 Deanna LeblancToronto police have arrested Joanna Flynn (50), a former nurse at Georgian Bay General Hospital for allegedly cutting off a patient’s life support without authorization.  

She is charged with manslaughter and with criminal negligence causing death. The victim, Deanna Leblanc (39), died at the hospital on March 2, 2014.  

The hospital CEO observed "A criminal charge involving someone at our hospital is a highly distressing occurrence and will create a good deal of anxiety for our community." (Toronto Star)  Mark Handelman said he has never seen a Canadian health care practitioner criminally charged for ending life support.

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Ideological Struggles Old and New in America: The Inappropriate Use of Coercive State Authority Fri, 10 Apr 2015 02:04:18 +0000 0 Bioethics Commission Makes Recommendation on Equitable Access to Safe and Effective Neural Modifiers Thu, 09 Apr 2015 15:52:24 +0000 0 Incentive to Stop Smoking? Thu, 09 Apr 2015 13:16:21 +0000 In the United States, the FDA tried to mandate that cigarette companies put nasty images of the harms of smoking onto cigarette packages, images that would take up at least half of the carton. It looks like that effort has … Continue reading

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Do Your Little Bit of Good: National Pain Strategy Comment Period Ends May 20 Thu, 09 Apr 2015 10:23:00 +0000 Do Your Little Bit of Good:
National Pain Strategy Comment Period Ends May 20
2.2 Create a comprehensive population health-level strategy for pain….
(Complete before the end of 2012)

In June 2011, those of us who served on the Institute of Medicine’s committee that published Relieving Pain in America sent our report to Congress. It included sixteen recommendations to improve care for at least 100 million Americans who live with chronic pain. It provided what we referred to as a blueprint to “transform the way pain is perceived, judged and treated.”

Our first recommendation (2.1) was to “improve the collection and reporting of data on pain.” We had all been dismayed to learn how little reliable data we actually had to draw from in our process. The second recommendation (2.2) was to “create a comprehensive population health-level strategy for pain prevention, treatment, management, and research. Our “blueprint” was fundamentally a timeline which sequenced our recommendations. We ranked the population health-strategy as our first priority and asked that it be completed within 18 months, i.e., by the end of 2012.

It has been my privilege to serve on the National Pain Strategy Oversight Committee, which was charged by the Department of Health and Human Services (HHS) with developing the plan called for by the IOM. Unfortunately, that charge was not issued until the end of 2012 and the process took much longer than we had anticipated. The committee’s work was completed last summer and then it entered the vetting process. The good news, however, is that last week the National Pain Strategy Report was posted in the Federal Register. Until May 20, 2015, recommendations and comments from the public are possible.

We wish to strongly encourage all of those interested in efforts to improve chronic pain care to review this document and share your thoughts about it. You can do so by going to -

The report is only 43 pages and is organized in six sections: 1) Population Research, 
2) Prevention and Care, 3) Disparities, 4) Service Delivery and Reimbursement, 5) Professional Education and Training, 6) Public Education and Communication.

Each section contains a statement of “the problem” and then provides objectives and strategies for remedying that problem. From my perspective, some of the Report’s most important objectives are to:
• Foster the collection of more and better data for all populations, including developing metrics for measuring progress. (Good solutions always start with good facts.)
• Determine and analyze the benefit and cost of current prevention and treatment approaches and create incentives for using those treatments with high benefit-to-cost ratios. (Get the biggest bang for the buck.)
• Develop standardized and comprehensive pain assessments and outcome measures intended to increase functionality. (Move beyond 1-10 pain scales.)
• Acknowledge and address biases in pain care. (Biases that are implicit, conscious or unconscious.)
• Demonstrate the benefit of inter-disciplinary, multi-modal care, including behavioral health, for chronic pain. (Pain is a complex issue that requires complex solutions.)
• Align reimbursement with care models that produce optimal patient outcomes. (Both public and private payers are critical to reform.)

Perhaps, most important of all, however, is to improve health literacy, communication and education about pain among patients, healthcare providers, policy makers and the public. 

More than 80 pain and policy experts from across the country volunteered their time to develop this report. Many others in federal agencies have also been involved, and all agreed to the following vision:
If the objectives of the National Pain Strategy are achieved,
the nation would see a decrease in the prevalence across the
continuum of pain, from acute, to chronic, to high-impact
chronic pain, and across the life span from pediatric through
geriatric populations, to end of life, which would reduce the
burden of pain for individuals, families and society as a whole.
Americans experiencing pain – across the broad continuum —
would have timely access to  a care system that meets their
bio-psychosocial needs and takes into account  individual
preferences, risks, and social contexts.  In other words they
would receive patient-centered care.

Further Americans in general would recognize chronic pain  
as a complex disease and a threat to public health and a just
and productive society. 

All those involved in developing the report are committed to getting it right, and to do so, it is critical that people living with chronic pain, their families and those who care for them (especially primary care providers) provide input and feedback. To paraphrase Bishop Desmond Tutu, “Do your little bit of good…. It is those things put together that change the world.”

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Lawsuit for Unilateral Withdrawal – King v. Summa Health Thu, 09 Apr 2015 08:00:00 +0000 0 Is a gift of ribs “slightly unethical” in the physician-patient relationship? Wed, 08 Apr 2015 20:56:20 +0000 by Craig Klugman, Ph.D.

In an editorial in the Chicago Tribune, a physician tells the story of an underserved patient who owned a rib joint. The patient would bring ribs whenever he had an appointment. And once a year, the patient would come to the hospital just to bring a smoked Thanksgiving turkey to the physician.

The patient lacks insurance and thus is not able to get a badly needed hip replacement. As the story continues, the physician contacts an orthopedic surgeon in another health system in hopes of getting treatment for the rib-producing patient.…

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Texas Futility Law – House Committee Hearing Today Wed, 08 Apr 2015 12:42:00 +0000 0 Would Better Risk Communication Reduce Fear of Flying? Wed, 08 Apr 2015 12:35:14 +0000 With so much recent news about airplane disasters, it’s easy to become frightened about flying. I wonder if a risk graphic like the following will do much to help? As reported on recently in The Economist, the risk graphic comes … Continue reading

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Religious freedom revisited Wed, 08 Apr 2015 12:00:14 +0000 Read More »]]> 0 Has the Pendulum Swung too Far in Favor of Patient Autonomy? Wed, 08 Apr 2015 08:30:00 +0000 "Institutional Culture and Policies’ Influence on Do Not Resuscitate Decision-Making at the End of Life," online first in JAMA Internal Medicine looks at the difference between (a) hospitals which have policies or a culture that prioritizes patient autonomy with regard to DNAR orders and (b) hospitals where doctors’ recommendations on what might be in patients’ best interests medically hold more sway.

Elizabeth Dzeng and colleagues argue that UK hospitals currently differ from the more consumer-oriented approach of their US counterparts and doctors' recommendations still hold sway over DNAR decisions. However, they are moving more towards the US model as the recent case of Janet Tracey at Addenbrookes hospital in Cambridge shows. Tracey’s family successfully sued the hospital over a DNR order that was implemented without the family's permission.

The authors interviewed 58 doctors and trainees at three academic medical centers in the US and one in the UK. Trainee doctors at hospitals with emphasized patient autonomy often felt compelled to offer the choice of resuscitation in a neutral way in all situations regardless of whether they believed it would be clinically appropriate. 

In contrast, trainees at hospitals where policies and culture prioritized best interest-focused approaches felt more comfortable recommending against resuscitation in situations where survival was unlikely. They felt confident, for instance, to discourage the ineffective use of CPR and found it ethically suspect to offer CPR in futile situations such as for frail elderly patients with incurable metastatic cancer where doing CPR may result in broken ribs and electric shocks as well as depriving them of a dignified death.

Unlike trainees, experienced doctors at all hospitals were willing to make recommendations against resuscitation if they believed it would be futile. 

The authors conclude: "Institutional cultures and policies might influence how physician trainees develop their professional attitudes toward autonomy and their willingness to make recommendations regarding the decision to implement a DNR order. A singular focus on autonomy might inadvertently undermine patient care by depriving patients and surrogates of the professional guidance needed to make critical end of life decisions."  (HT: University of Cambridge)

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When Helpful Nudges Aren’t Helpful Tue, 07 Apr 2015 14:23:21 +0000 Gerald Ashley (twitter handle @Gerald_Ashley) recently tweeted a photo of what was SUPPOSED to be a helpful nudge, reducing the odds that people would bump into each other going up and down the stairs. Can you see what might not … Continue reading

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Texas Advance Directives Act: Must a Death Panel Be a Star Chamber? Tue, 07 Apr 2015 08:30:00 +0000 0 American Pharmacists Association Votes to Discourage Pharmacists from Participating in Executions Tue, 07 Apr 2015 01:04:32 +0000 0 A Prayer Mon, 06 Apr 2015 23:01:30 +0000 Read More »]]> 0 Johns Hopkins University Sued for $1bn Over Guatemalan Study Mon, 06 Apr 2015 14:36:05 +0000 ]]> 0 Health Insurance Is About Financial Security Too Mon, 06 Apr 2015 13:03:00 +0000 People like me, trained to be physicians, have pushed hard to promote health insurance in the United States because we believe, with some evidence to back up our claims, that good health insurance promotes better health. When people don’t have … Continue reading

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Non-beneficial Treatment Policy University Hospitals – Case Medical Center (video) Mon, 06 Apr 2015 08:00:00 +0000 0 Medical Futility – Like Ordering Osso Buco at a Vegan Restaurant Sun, 05 Apr 2015 08:00:00 +0000 0 More Safeguards Often Mean Less Access Sat, 04 Apr 2015 13:16:00 +0000 0