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11/27/2014

As You Wish – Virginia Advance Care Planning Website

Four Virginia health systems (Bon Secours, Chesapeake Regional Medical Center, Riverside Regional Medical Center and Sentara Healthcare) have just launched a new "As You Wish" advance care planning website.   This is a good time to make these res...

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

11/26/2014

Striking the Balance Between Population Guidelines and Patient Primacy

by Susan Mathews, Bioethics Program Alumna (2014) Breast cancer is the second leading cause of cancer death among North American women. Although routine mammography decreases the risk of death by about 15 percent, research on the effectiveness of wide-scale screening programs shows that 2,500 people would need to be screened to prevent one cancer death among women […]

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11/26/2014

Scientific Research: Critiquing the Critics

<p class="MsoNormal" style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">When I was a young scientist (quite some time ago) there was a joke that seemed to be circulating about how our older established colleagues conducted science. This was a somewhat cynical exercise motivated, at least in part, by professional jealousy. The joke went on to say that one could establish a fact by writing two papers. In the first paper the author speculates that something might be true. In the second paper the author says that the previously speculated thing is true, and references the paper containing the original speculation. In fact I have rarely seen this actually done. But as I write blog I have <a href="http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001747">an example</a> sitting in front of me on my desk.</span><span style="line-height: 19.0400009155273px;"> It is especially intriguing that this paper was written by an individual who maintains that “<a href="http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0020124">most published research findings are false</a>”.</span></p> <p class="MsoNormal" style="line-height: 19.0400009155273px;">The paper in question was published just last month with the rather presumptuous title: “How to make more published research true”.  This, of course, is a statement predicated on the presumption that much published research is false. Indeed the author says in the <a href="http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0020124">first paragraph</a>, referring to scientific research, that “Many new proposed associations and/or effects are false or grossly exaggerated” and <a href="http://ovidsp.tx.ovid.com/sp-3.13.1a/ovidweb.cgi?WebLinkFrameset=1&amp;S=AHIBFPDHNADDAJGMNCLKIFOBKEKBAA00&amp;returnUrl=ovidweb.cgi%3f%26TOC%3dS.sh.22.23.27.31%257c2%257c50%26FORMAT%3dtoc%26FIELDS%3dTOC%26S%3dAHIBFPDHNADDAJGMNCLKIFOBKEKBAA00&amp;directlink=http%3a%2f%2fgraphics.tx.ovid.com%2fovftpdfs%2fFPDDNCOBIFGMNA00%2ffs047%2fovft%2flive%2fgv024%2f00001648%2f00001648-200809000-00002.pdf&amp;filename=Why+Most+Discovered+True+Associations+Are+Inflated.&amp;PDFIdLinkField=%2ffs047%2fovft%2flive%2fgv024%2f00001648%2f00001648-200809000-00002&amp;link_from=S.sh.22.23.27.31%7c2&amp;pdf_key=B&amp;pdf_index=S.sh.22.23.27.31&amp;D=ovft">refers to</a> two previously published papers both single author papers by him.</p> <p class="MsoNormal" style="line-height: 19.0400009155273px;"><strong style="line-height: 19.0400009155273px; color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="text-decoration: underline; color: #000099;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong></p>

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This entry was posted in Health Care, Research Ethics and tagged , , . Posted by Hayley Dittus-Doria. Bookmark the permalink.

11/26/2014

The Lack of Consensus about Futility (Video)

Earlier this month, Alan Meisel presented "The Lack of Consensus about Futility" as part of the MacLean Center's 2014-2015 seminar series.

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

11/25/2014

What Jonathan Gruber Didn’t Say About Obamacare

Jonathan Gruber went from unknown to infamous in the last few weeks, a result of disparaging comments he made about the Affordable Care Act (aka Obamacare) and even more disparaging ones he made about the American people. According to Gruber, the Obama … Continue reading

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This entry was posted in Health Care and tagged , , , , , . Posted by Peter Ubel. Bookmark the permalink.

11/25/2014

Bad Blood Author James H. Jones Visits the Bioethics Commission

The staff of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) was pleased to welcome James H. Jones, Ph.D., to the office on November 21, 2014 for a discussion of his book Bad Blood: The Tuskegee Syphilis Experiment, A Tragedy of Race and Medicine. First published in 1981 (Revised edition, 1993), Bad […]

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This entry was posted in Health Care and tagged , . Posted by Alannah Kittle. Bookmark the permalink.

11/25/2014

New Advance Care Planning Videos Show How to Avoid Premature Dying

Did Robin Williams commit suicide due to fear of Advanced Dementia? Did Brittany Maynard hasten her dying based on her fear of future unbearable pain? Did they pay the high price of premature dying—losing some remaining enjoyable life—to act while they still had capacity to control WHEN they died? Might they have lived longer had they been aware of an effective plan to die AFTER losing capacity?

Psychiatrist/bioethicist Stanley Terman, PhD, MD, Medical Director and CEO of the non-profit organization, Caring Advocates, has created ​three ​new videos from live presentations in Oct. and Nov. 2014​.

​1) The BEST WAY to Say Goodbye—if living with pain or dementia.​

Th​is video portrays poignant stories of patients that illustrate the need for diligent, strategic Advance Care Planning:

Robin Williams: Was a “key factor” in his decision to commit suicide experiencing hallucinations or other symptoms of early Lewy Body Dementia? Might he have suffered from the “Dementia Fear”?

Brittany Maynard: She admitted this “did not seem like the right time” but then died a few days later. She feared cancer would take away her autonomy: “The worst thing that could happen to me is that I wait too long.” Where there issues she could have worked on to reduce her current suffering, so she could decide to live longer?

Meryl Comer: As her husband’s caregiver, she considers herself a “POA” (Prisoner of Alzheimer’s). Dr. Gralnick was diagnosed 20 years ago. Yet no professional has ever advised Ms Comer about the ethically accepted method of “Substituted Judgment” to make end-of-life decisions. The new “Consensus of Substituted Judgment” method strives to be more accurate, less stressful, and its protocol has built-in, a way to deal with family conflicts.

Margaret Bentley: Neither the administrators of her residential care facility nor the court would HONOR the instructions she made in her Living Will, even though they were consistent with the requests made by her husband and daughter—her proxies/agents. Her sad story shows why DILIGENCE is necessary when completing a written Living Will.

Casey Kasem: His final weeks were plagued with pain and family conflict. The misery of his last chapter of life might have been avoided had he used his (famous) voice to make a strategic audio or video recording on which he stated what he wanted and explained why.

Gillian Bennett: Was her suicide premature and motivated by the “Dementia Fear”? Would she have decided to live longer if she had known about, and had confidence in a strategic plan to implement Natural Dying—AFTER she reached the stage of Advanced Dementia?

Sadly, many people are led to believe they have ONLY two options: premature dying (so they lose some joyful life) OR prolonged dying (so they are forced to endure more suffering longer). A third option makes premature dying unnecessary, sad, and tragic: Diligent, strategic Advance Care Planning.

This one-hour video can be viewed in two parts. Part 2 begins at minute 36. It includes:

  • What is Natural Dying and why is it a peaceful and moral way to die?
  • How can you complete a clear, specific Living Will by making “one decision at a time”? 
  • How can you set up a strategy to feel confident you will get relief from end-of-life pain?
  • What can you do to relieve the prolonged suffering of a loved one who now lives with Advanced Dementia—if he never completed a clear and specific Living Will?

​2) ​Lost, NOT found in Alzheimer’s—important, timely & relevant lessons in Meryl Comer’s revealing book:

“Slow Dancing with a Stranger—Lost and Found in the Age of Alzheimer’s” is inspiring, informative, and above all, honest. It shines a bright light on the dark side, to allow readers to learn what is important, timely, and relevant. It can motivate readers to complete their own diligent Advance Care Planning, if they ever reach the stage of Advanced Dementia. It also demonstrates the urgent need for broader education so that people are informed about end-of-life options that are legal and moral—if their loved one did not previously complete a clear and specific Living Will.

Three events had potential to dramatically change the lives of two people in their prime. Emmy-award winning journalist, Meryl Comer as the "POA"--"Prisoner of Alzheimer's" and her afflicted with dementia husband, Harvey Gralnick, the former head of oncology and hematology at the National Institutes of Health. These events were:  
(1) Not receiving an accurate diagnosis promptly;
(2) Not receiving a realistic potential prognosis; and,
(3) Not receiving information and advice so the POA would know how to implement the ethically accepted standard of “Substituted Judgment method” that she needed, to make a difficult end-of-life decision.

WITHDRAWING hand-feeding/drinking but still offering (that is, NEVER WITHHOLDING) the vital substances of food and fluid can be clinically and ethically appropriate to reduce prolonged and intense suffering of Advanced Dementia patients. Such actions can also be considered consistent with the Principle of Proportionality.


​3) ​Must we all die with forced hand-feeding in Advanced Dementia? Will others honor our Living Will?” 
​​
​Initially, this PowerPoint ​presentation was given to the American Society for Bioethics and Humanities annual meeting in October, 2014​. This video has a revised​, updated audio.

Dementia (Alzheimer's) presents huge challenges. In the advanced stage, the goal to sustain life may conflict with the goal to relieve suffering.

Margot Bentley completed a strongly worded Living Will because she was adamant: She did NOT want to suffer a long time in Advanced Dementia. She also appointed her warriors: her husband and daughter —to make sure her wishes would be honored.

Sadly, her plan did not work. She has now been forced-fed for three years.
What can we learn about from her experience?

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

11/24/2014

Where Social Justice Fits in Medical Decision-Making

by Susan Mathews, Bioethics Program Alumna (2013) The current healthcare reimbursement system curtails treatment choices for Americans by narrowing networks, imposing strict guidelines for coverage or setting deductibles that are so high as to restrict to care.  But what does social justice have to say about this issue? Social justice implies fairness and mutual obligation in society. As members […]

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This entry was posted in Health Care and tagged , . Posted by The Bioethics Program. Bookmark the permalink.

11/24/2014

Stop Unwanted Medical Treatment

Healthcare providers regularly ignore end-of-life wishes or give patients insufficient information to make medical decisions.  Check out Compassion & Choices campaign to stop unwanted medical treatment. 

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

11/24/2014

The Importance of the Collective Afterlife for Human Values: The Collective Afterlife and the “Afterlife Conjecture”

by J.S. Blumenthal-Barby, Ph.D.

In his new book, Death and the Afterlife (comprised of his two Tanner Lectures on Human Values), philosopher Samuel Scheffler argues that the assumption of a “collective afterlife” (i.e., the assumption that humanity lives on here on earth after our own individual deaths) plays an essential role in us valuing much of what we do. He argues, provocatively, that if a collective afterlife did not exist we would cease to value much of what we do (his “afterlife conjecture”). This includes our valuing research in science, technology and medicine; social and political activism; building or reforming social or cultural institutions; improving the physical infrastructure of society; protecting the environment; and procreation.…

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This entry was posted in Featured Posts, Philosophy & Ethics. Posted by Jennifer Blumenthal-Barby. Bookmark the permalink.