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07/22/2014

Kim Teske – Compelling Story of VSED

The Globe & Mail has a very extensive story on Kim Teske and her use of VSED to die on her own terms.







































Teske had Huntington’s, an incurable genetic disease that combines aspects of Parkinson’s, Alzheimer’s and schizophrenia. She feared that, if she did not act now, she will end her days in an institution with strangers pushing mush into her mouth and hosing her down after she defecates.  


So, Teske stopped eating and drinking. Around noon on day 12 of her fast, Teske died peacefully, with none of the delirium or agitation that some watchers had anticipated.

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

07/22/2014

What Is Ethics Doing?

<p class="MsoNormal" style="text-align: left;">I recall being a PhD candidate in philosophy in the 1970’s, I often pondered the subject matter of my graduate courses in ethics. I would ask myself, what does any of this have to do with ethics? What are we doing?</p>
<p class="MsoNormal" style="text-align: left;">As our courses went from Kant to Mill to G.E. Moore to the Emotivists and others, I couldn’t help but have a sense of unreality about the content of what I was learning.</p>
<p class="MsoNormal" style="text-align: left;">How can we use reason to find a basis for knowing right action? What are the ways we can define right action based on a normative moral theory?</p>
<p class="MsoNormal" style="text-align: left;">What is the meaning of good? Right? And obligation? Can these terms be defined within a theoretical, substantive moral framework or are they just expressions of feelings and emotions without any cognitive content? If they are more than the latter, what do they mean?</p>
<p class="MsoNormal" style="text-align: left;"><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20px;">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 Clinical Ethics, Health Care and tagged , , , . Posted by Hayley Dittus-Doria. Bookmark the permalink.

07/22/2014

Wake Up to Dying Project

The Wake Up to Dying Project is an awareness and action campaign that encourages people to think and to talk about dying.  The organizers do this by gathering and sharing stories about death, dying, and life. They also do this through art and hands-on opportunities to explore these important subjects.


The organizers believe that if we consider this difficult subject more purposefully we will be more prepared, practically and emotionally, to face this shared human experience. We might find ourselves more willing to participate in the dying process of a loved one or a neighbor. We might even be less afraid to think about our own deaths.


One cool aspect of the Project is a traveling exhibit which will offer people a safe and engaging place to listen to personal stories about death, dying, and life.



Exhibit visitors will hear audio stories from over fifty individuals, including: (a) people who are dying, and their family members; (b) experts such as doctors, nurses, chaplains and those who work regularly with the dying; people with particular insights about the process of grieving a lost loved one.  The audio stories will be complemented by abstract video and contemplative hands-on activities.


The exhibit will be housed in a mobile unit that travels from community to community and stays in each location for five to ten days. By parking on ‘Main Street,’ we hope to encourage participation from a large cross section of a community.


When visitors leave the listening trailer they enter a tent where engagement opportunities are offered, including local volunteer work and community art projects. They will also be invited to record and share their own stories. The tent is designed to act as a community space for the duration of the exhibit, and will be offered to local organizations to host related workshops, trainings, panels, and films. 

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

07/21/2014

Facebook’s Emotion Experiment: Implications for Research Ethics

Robert Klitzman and Paul S. Appelbaum

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This entry was posted in Health Care and tagged . Posted by Susan Gilbert. Bookmark the permalink.

07/20/2014

DALLAS BUYERS CLUB meets SCIENTIFIC INTEGRITY

DALLAS BUYERS CLUB  is a biopic about an unlikely hero, directed by Québécois Jean-Marc Valle and written by Craig Borten and Melisa Wallack. In case you get a call from your local AIDS-Walk coordinator, remember 50,000 cases of AIDS (Acquired Immune Deficiency Syndrome) still occur in the USA annually. Transmission is largely preventable with education, testing and early intervention. Ethnic peoples of color are disproportionately affected in new cases. Thirty-five years ago, I never imagined AIDS would be the defining disease of my career and then some.  After my AIDS-Walk call, I pulled out my notes on Dallas Buyers Club, which screened October, 2013 at the Mill Valley Film Festival. It has won three Oscars and too many to count other awards.

The year 2013, brought a number of film releases with main characters who had significantly degenerate moral fiber. You know them, good acting, sex, drugs, brutality prominent but few redeeming qualities.  Dallas Buyers Club (DBC) is not one of those films. Its lead character is definitely a degenerate, but develops moral fiber.  If “The Star” of a film is the person who undergoes the most change, Ron Woodroof (Matthew McConaughey) may be the star of the millennium. His character moves from self-serving reprobate to enlightened self-interest. In the process, he believably expands compassion for others. The compassion fall-out includes Jared Leto, (Rayon) who well plays a stereotype of a transgender woman whose script, in contrast to Woodroof’s, traverses only the narrow ground between dying and dying more.


Dr. Eve Saks (Jennifer Gardner) spoke particularly to me. She had that deer in the headlights feel to her — as she decided to which side of the road she would jump — with her patients, or with her retrograde moving profession. Her subtle portrayal of an overwhelmed newbie was reminiscent of my internship at Cook County Hospital, Chicago in 1985.  I saw 17 hospitalized patients with AIDS, within my first 35 days. Fortunately, I had good role modeling by Drs. Ron Sable, Renslow Sherer and Dr. Jonathan Mann. 


Among those 17 patients was an 8 year old girl with Leukemia, AIDS and tuberculosis – the later was diagnosed on autopsy, which brings me to the bioethical point. Four years before that autopsy, I was told in medical school that miliary or disseminated tuberculosis no longer existed — that was then, this was now.  Diseases change and so should the manner of treating and studying them and their cures.  In medicine it’s not “location, location,” but “observation, observation.”


DBC is about how AIDS, science, research and Federal Drug Administration regulations were forced to change. The change was pushed by the autonomy of people who ran the most risk of dying from AIDS and their allies.  The principle of justice requires equipoise or the equitable distribution of burdens and benefits.  The job of clinicians is to understand and communicate the burdens and benefits so that individuals, who can, are able to exercise their autonomy. When there is no proven cure, those with life threatening illnesses and intact decisional capacity, now, can choose through the informed consent process, to run the risks of clinical research protocols, whose outcomes are as yet unproven.  Access to such trials is currently a health disparity. Navigating the clauses in the three proceeding sentences is the job of bioethics in new diseases, therapies and research.  This is how we learned that oral anti-virals could reduce HIV/AIDS vertical transmission from mother to child. 


Data safety monitors (DSM), augment institutional review boards and were given teeth during the rise of the AIDS epidemic.  DSM allowed tracking of acceptable burdens associated with research, on vulnerable persons while the studies are in progress.  DSM also can stop studies where the burdens outweigh the benefits, or the benefit is so clear that lifesaving therapies should not be with-held to complete the research.  This acceptability should be consistent with the 2013 World Medical Association amended Declaration of Helsinki on Medical research. Significantly this amendment references identifiable human material or data. This would recognize the privacy of genomic material correcting ethical violations associated with HeLa cells and other genetic technologies. Consider, non-small-cell lung cancer, the most ubiquitous cancer in the world.  In that case, we look at the value of Palliative Care, genomic-bio-marker driven therapy and clinical trials, all three at once. The criteria for treatment look like a menu at an over stocked diner, but bioethics helps to navigate them.   Such protocols would not be possible without changes in policy and procedure reflected by the struggles of those affected by HIV/AIDS and the bioethical analysis accompanying them.


Set in 1985, the story is sandwiched between the year before AZT was found effective (the first of the anti-viral drugs used in HIV/AIDS) and the year after, Robert Gallo and Luc Montagnier both discovered HIV-1 as the agent causing AIDS.  The footprints of the Dallas Buyers Club are everywhere.


references:


Dallas Buyers Club (35mm) directed by Jean-Marc-Vallee (2013) Focus Features (USA) 116 min


Some other films about the HIV/AIDS epidemic:


How to Survive A Plague (35mm) David France (2012) Sundance theatrical/IFC (USA) 109min


Philadelphia(35mm) directed by Jonathan Demme (1993) Tri Star (USA) 125 min


Yesterday (35mm) directed by Darrell Roodt(2004)HBO USA ( South Africa) 96 min ( Zulu, English  subtitled)


The Declaration of Helsinki http://www.wma.net/en/30publications/10policies/b3/  accessed July 16, 2014 2013


HIV/AIDS statistics USA http://www.cdc.gov/hiv/statistics/basics/ataglance.html accessed July 16, 2014.


World Association of Bronchoscopy and Interventional Pulmonology Academy : Small Sample Tissue Acquisition and Processing for Diagnosis and Biomarker-driven Therapy of NSCLC. Bioethical issues video commentary. http://www.wabipacademy.com/site/webcast/clinicalstem1/step40

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This entry was posted in Health Care and tagged . Posted by September Williams, MD. Bookmark the permalink.

07/19/2014

Do Oregon and North Dakota Healthcare Surrogates Perform Better?

In most states an individual can appoint a healthcare agent not only without the consent of the agent but also without even discussing the appointment with the agent.  In fact, many healthcare surrogates fulfill the role of substitute decision mak…

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

07/18/2014

Is complicity important in Hobby Lobby decision?

ontinued litigation will not unite the country but compromise can. Forcing individuals and their companies to act against deeply held religious belief should not be done and will only inflame partisan rancor.

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

07/18/2014

Safeguarding Children in Emergencies through Ethical Pediatric Research

Tomorrow, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) will present its recommendations on pediatric medical countermeasure (MCM) research at the 10th Annual Pediatric Bioethics Conference in Seattle. The conference, hosted by the Treuman Katz Center for Pediatric Bioethics at the Seattle Children’s Hospital, takes place July 18 and 19, 2014; its […]

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

07/18/2014

Pope Cited by NRLC before Senate Judiciary Committee

Many of my (pro-liberty) positions on end-of-life medical treatment issues do not endear me to the National Right to Life Committee.  

But I do aim to produce careful and circumspect scholarship.  Consequently, I was pleased to see the presi…

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

07/17/2014

Great but “unaffordable” new drugs

I’ve posted several times on the challenges posed by new drugs that work, but cost the moon.  It’s one thing when an expensive drug is only marginally effective.  It’s another when the drug looks really good, like Kalydeco for cystic fibrosis or Sovaldi for hepatitis C.  I’ve suggested here and here that both drugs are worth high prices, although pushback from payers on the price… // Read More »

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