End of life, language, and the press

By Cristiane Avancini Alves

In my previous post, I mentioned that Brazil does not have a specific law about advance directives. Nevertheless, a recent Resolution of the Federal Board of Medicine addresses this subject. It indicates that so-called “advance directives of will” are the set of desires, previously and expressly manifested by the patient, about the treatment he wants (or does not want) to receive when he is unable to express his will in a free and autonomous manner. Two points must be highlighted: the physician will not follow any patient’s directive that could violate the Medical Ethical Code, and the patient’s wish will overrule the intervention of his family regarding his decision.

The Resolution clearly expresses that “advance directives of will” mean what the phrase itself indicates: a direction, not a closed document that cannot be modified or that must be blindly followed. Time is significant in this context. For example, rapid biomedical development and the new possibility of cure can change the patient’s treatment course, regardless of a prior directive. Besides that, our personal believes about life and death can also change. Unfortunately, these elements have been misrepresented by the media. One of the most important Brazilian magazines dedicated a special report to the subject, but the headline was: “I decide my end”. No. That’s not what the Resolution affirms. The report continues by saying that the expression “advance directives of will” is a “pompous” name for “vital testament”. No. The title is not pompous, but rather accurate – reflecting simply that the document is a previous direction made by the patient. Moreover, advance directives of will cannot be related to testament, since the directive’s effects will occur during life, not after it – as it is for the legal meaning for testament.

Overall, the issues that came up here are indicative of broader issues related to how the media and public understand their rights, and the importance of word choice and clarity to that understanding.

Gun Violence: Lessons Learned from Car Crashes

By Scott Burris, JD

“I have an absolute right to drive any vehicle I want, on any road, at any time, at any speed, and under any conditions.”

That’s an argument few people would take seriously. And few people would take seriously the argument that we should ban or substantially limit automobile use, despite the fact that America suffers more than 30,000 motor vehicle deaths every year.

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We Need to Treat Violence as Public Health Issue

By Art Caplan (cross-posted from his Vitals column on NBCNews)

The mass murder of 20 children and six adults Friday in Newtown, Conn., has provoked yet another round of recrimination, finger pointing and breast-beating. Was the shooter mentally deranged? If there was more gun control, would this have happened? Did violent video games play any role? What we fervently want as we continue to reel from a story whose misery seems to know no bounds is to find a clear cause – a reason why this happened – so that we can fix it.

We hope to see something in all the stories, analyses, commentaries, Facebook postings and Twitter speculation that gives us the reason behind what happened and thus a guarantee that if we understand and act on it then no 6 year old or her parent need to worry ever again what might happen at their school. We hope that no college, hospital or mall will ever again have a reason to practice drills for “shooters” and no play or movie-goer grow anxious over who has snuck into the theater with evil intent.

But, there is no simple answer. We have ourselves to blame for where we find ourselves in terms of mass shootings. Our culture is too far down the road of tolerating and even extolling violence. We do so in our popular entertainment, we permit the mass marketing of violence to young kids, and we thrill to it in too many of our sports. A lot of people make a lot of money selling violence. I doubt that will change.

Read more…

2012 Global Congress on Intellectual Property and the Public Interest

By Adriana Benedict

The 2012 Global Congress on Intellectual Property and the Public Interest has just come to a close in Rio de Janeiro, Brazil.  The conference brought together global leaders in intellectual property-related fields like access to medicines, access to knowledge, internet freedom, innovation and development, and open educational resources.  I was invited to participate in the various sessions concerning access to medicines, which focused on two sides of this global health challenge.

The first part of the access discussions focused on best practices and threats in the use of TRIPS flexibilities in developing countries.  Participants emphasized the need to look beyond the usual focus on compulsory licenses to set new priorities for understanding and leveraging less-developed flexibilities such as patentability criteria, patent opposition mechanisms and parallel importation.  An important overarching theme in these discussions was reframing flexibilities as rights, as they carry the same legal status as the intellectual property rights which make them necessary.

The other side of the discussions focused on innovation and research and development (R&D) for the developing world, primarily through recent advances by the WHO CEWG report in promoting a binding convention in this realm.  At the forefront of these proposals is the notion that incentives for innovation should be de-linked from product prices in order to address the needs of the developing world.  Participants emphasized that, moving forward, advocates should be careful to ensure that public and institutional debates on alternative R&D models do not narrow their focus from neglected populations to neglected diseases.

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Is Health Law the Problem Underlying the Physician Shortage?

By Christopher Robertson

This week, the New York Times Sunday Review has an editorial arguing that the shortage of primary care physicians could be reduced if we drew more heavily upon other professions, including pharmacists and nurse practitioners, who may be able to provide care more efficiently.  The Affordable Care Act’s efforts to increase insurance coverage and eliminate cost-sharing for preventative care, will only exacerbate the shortage of primary care physicians.  More to the point, the editorial alleges that various state and federal laws create barriers to the sort of integration of healthcare professionals to address the shortage.

Those “scope of practice” laws were enacted to either protect consumers from incompetent healthcare or protect physicians from competition in the healthcare marketplace, or likely some mixture of both.  We know where mainstream physicians stand anyway.  In the words of the American Medical Association’s own newsletter,  “physicians [have] fought a blitz of scope-of-practice expansions by other health professionals on legislative, legal and regulatory fronts.”

The shortage of physicians is also a product of the number of young doctors that our medical schools are producing.  Although several new schools have launched in recent years, others are have actually shrunk due to budget cuts.

The Newtown Shootings, Gun Control, and Cultural Cognition

Like most (all?) of the blog readers, I find it difficult to return to my every day life this morning in the wake of the Newtown shootings. This post is not about the tragedy, nor is it a political or public health analysis of where to go next. Instead I want to offer a meta-thought on the debate itself. In the past 3 days my social media has lit up with postings, comments, etc, about the shooting. About 2/3 of my facebook friends are left of center and 1/3 right of center, and I’ve seen the usual back and forth about criminalizing gun ownership, “guns don’t kill people, people kill people,” the history of the Second Amendment, more guns in the hands of administrators would have solved the problem, etc.

What has struck me the most, though, is the way in which my very well-educated friends on both sides of the aisle understand the facts about guns and violence. As Dan Kahan and his co-investigators in the Cultural Cognition Project suggest in their study of gun control debates, individuals perceptions about the facts in the debate are highly dependent on world view. To quote from their webpage describing their gun control studies:

From the outset, the Cultural Cognition Project has been focused on the American gun control debate. That debate is naturally framed as one between competing risk perceptions: that too little gun control will increase deliberate shootings and gun accidents; and that too much will render law-abiding citizens unable to defend themselves from violent predation. Associated most famously with the work of Mary Douglas and Aaron Wildavsky, the cultural theory of risk posits that individuals selectively attend to risk in a way that reflects and reinforces their preferred vision of society. Consistent with this thesis, CCP members have found that which “gun risk” individuals take more seriously is indeed strongly predicted by their cultural worldviews. Persons who hold egalitarian and communitarian worldviews worry more about crime and gun accidents, an  anxiety that coheres with their negative association of guns with patriarchy, racism, and selfish indifference to the well-being of others. Persons of a hierarchical and individualistic worldviews, in contrast, tend to see guns as safe, and worry much more about the danger of being rendered defenseless against attack; this perception of risk coheres with their positive associations of  guns with traditional social roles (father, protector, provider) and individualistic virtues (self-reliance, courage, physical prowess).

I would commend all blog readers to this excellent work. Where it leads me, though, is to question whether it is possible to overcome cultural cognition effects in this area? Does doing so require the kind of cultural education (and in which direction?) that we view in other countries as propaganda? If we cannot overcome our cultural cognition differences, will we as a country remain hopelessly deadlocked?

Special issue in the Journal of Philosophy & Technology on evolution, genetic engineering, and human enhancement

By Yu-Chi Lyra Kuo

A special issue published this month by the Journal of Philosophy & Technology features a collection of articles discussing evolution, genetic engineering, and human enhancement. Recent years have seen a rapidly expanding variety of approaches to exploring the normativity of human enhancement, by philosophers, bioethicists, physicians, and biologists. The articles in this special issue largely focus on the question: how can evolution and aetiological teleology inform biological ethics and theories of human enhancement?

For a separate collection of articles discussing the ethics of human enhancement from the perspective of the physician-patient relationship, see this special issue by the American Journal of Bioethics, published approximately a year ago.

Happy reading, and happy holidays! ~YK

Gun Violence: A Public Health Concern?

By Michele Goodwin

Posted from Amsterdam

I was in India when the tragic news hit; 26 people dead–20 of them children in a massacre at Sandy Hook Elementary School in Newtown, Connecticut on December 14, 2012.   In India, NGOs struggle with ending violence against women and children. Acid tossed in the faces of women by scorned boyfriends is not uncommon nor the increasing, random acts of slitting women’s throats on trains.  Sensational it may seem to us; but very real for women in Mumbai and Bihar.  In fact, the day before learning of the tragedy in Connecticut, Delhi officials announced the hiring of thousands of guards to deploy at 548 elementary schools in South Delhi amid reports of rapes and molestations of little girls who are followed, harassed, and in too many cases harmed on their way home after leaving school.  The government’s response comes on the heels of parents threatening to remove their daughters from school.

In that country and others, broad scale violence is understood as more than a national problem; it is a social and public health problem. In cases of sexual violence and the externalities that result, including sexually transmitted diseases and pregnancies, the public health component may be more visible to those of us in the West.  However, the public health indicators extend physical health problems; violence causes emotional and psychological trauma.  The mental health component of public health must be better understood.  Americans who live in gang infested communities, where violence seems almost endless and difficult to escape, understand this all too well as their kids experience anxieties closer to post traumatic stress disorder as part of their daily lives.

The Newtown shootings offer a moment for reflection on the lives lost and also our nation’s first principles and commitments.  Perhaps this will be a time to consider gun control beyond a very divided constitutional law debate to also understand its public health dimensions.  Who benefits from current policies?  Who are those harmed?  Physical wounds do heal, but the mental health traumas, grief, and anxieties often take a lifetime to manage and overcome.

Twitter Round-Up (12/9-12/15)

By Casey Thomson
This week’s round-up looks at the problems of substandard drug prevalence abroad, NIH’s possible push for an anonymous grant-awarding process, and the Liverpool Care Pathway investigation. Check it out below!
  • Dan Vorhaus (@genomicslawyer) included a link to a report on the recent launch of Personal Genome Launch Canada. The post includes links to help navigate the content and learn more about the intricacies of this project. (12/9)
  • Frank Pasquale (@FrankPasquale) shared a post on the benefits and detriments of raising the age of Medicare eligibility from age 65 to 67 – an idea that has recently gained sway in the political arena. The author ultimately concludes that the move would only be a matter of cost shifting rather than cost saving, and thus harm the disenfranchised 65-66 year-olds that would front the cost. (12/10)
  • Frank Pasquale (@FrankPasquale) also included this article on Dr. Oz’s wrongful diagnosis on organics. While concerns about finances must indeed be taken into consideration when families decide what foods to purchase, families must also be concerned about the presence of pesticides in their food. Organic food, while more expensive, avoids this health hazard. (12/10)
  • Frank Pasquale (@FrankPasquale) additionally linked to this report on the preponderance of substandard (and oftentimes, consequentially lethal) drugs particularly in emerging markets. Efforts to crackdown on substandard drugs have thus far focused largely on counterfeit drugs, rather than those that are the result of “shoddy manufacturing and handling…or deliberate corner cutting,” which constitute an arguably much greater public health threat. (12/10)
  • Daniel Goldberg (@prof_goldberg) shared this post on the prevalence of worthless clinical practice guidelines. The article notes the need to distinguish the guidelines that meet much of the Institute of Medicine (IOM) quality criteria from the rest. (12/10)
  • Alex Smith (@AlexSmithMD) linked to a blog post on advance care planning and the gap between the needs of the healthcare system and those of patients. Currently, much of the paperwork required for advance directives is given without providing families and patients concrete skills needed for both identifying their desires and communicating such desires to direct their own medical care. This article calls for refocusing on providing direct patient empowerment in addition to the existing efforts to improve clinician communication in order to facilitate the ability of advance care planning to reflect the patient’s wishes. (12/11)
  • Michelle Meyer (@MichelleNMeyer) retweeted an article about the NIH’s consideration of introducing anonymity into the grant-awarding process in order to alleviate some of the concerns with bias that have long-plagued the agency. (12/12)
  • Dan Vorhaus (@genomicslawyer) also posted a report on BGI, a world-leading DNA sequencing organization based in China, and their commercial expansion efforts into the healthcare, agriculture, and aquaculture sectors. The question of whether BGI is more a research institute or commercial enterprise comes into question in the article. (12/12)
  • Stephen Latham (@StephenLatham) included a link to his own blog post on the recently renewed controversy concerning the Liverpool Care Pathway for the Dying Patient (LCP), particularly as to whether patients put on the LCP had a discussion with their care providers prior to the decision and whether hospitals were wrongly putting patients on the pathway. The talk of scandal sparked an independent investigation into the LCP; Latham’s article expressed his hope for thoroughness in the investigation and for serious consideration on how to renew the LCP effectively. (12/12)
  • Arthur Caplan (@ArthurCaplan) posted a link concerning the implications of 23andMe, a personalized genomics company, and their launch of the $99 genetic test in the hopes of inspiring greater numbers to get tested. The article’s author reflects on how the real benefit will likely not be immediate for individuals, but will rather depend on the chance that greater data will lead to more breakthroughs in understanding the human genome. (12/14)

Note: As mentioned in previous posts, retweeting should not be considered as an endorsement of or agreement with the content of the original tweet.

Dreams Deferred

By Wendy Parmet

After the November election, President Obama’s executive order implementing parts of the so-called “Dream Act” was widely credited with shoring up his support within the Latino community.  Less often noted was his Administration’s decision to exclude the “Dreamers” from the benefits afforded by the Affordable Care Act.

Last August, the Center for Medicare Services (CMS) issued an interim final regulation stating that individuals who benefitted from the President’s program, more formally known as “Deferred Action for Childhood Arrivals” or DACA, would not be considered “lawfully present” for purposes of eligibility to health benefits established by the Affordable Care Act, including the Pre-Existing Condition Insurance Plan and the subsidies and credits that will be available in 2014 to purchase insurance through the health insurance exchanges. Pre-Existing Condition Insurance Plan Program, 77 Fed. Reg. 52614-01 (Aug. 30, 2012) (to be codified 45 C.F.R. § 152.2), https://www.gpo.gov/fdsys/pkg/FR-2012-08-30/html/2012-21519.htm.

The impact of this little noticed determination is quite significant. Although most of the estimated 1.7 million DACA immigrants are healthy, because of their age (under 30), many lack access to employer-provided health insurance. Moreover, if as expected, employers begin to shift their health insurance programs to the ACA-created exchanges, DACA immigrants may find themselves barred from employer-provided plans, even though under the President’s executive order they have a legal right to work in the United States.

The insurance gap created by CMS’ determination that the DACA immigrants are not “lawfully present” in the U.S., a decision that is inconsistent with the Administration’s conclusion that other deferred action recipients are eligible for benefits established under the ACA, illuminates the critical relationship between immigration policy and health policy.  To a surprising degree, the health insurance access problem in the U.S. results from laws that bar immigrants (including many with Green Cards) from many government-supported health insurance programs, including Medicaid. In 2010, over 45 % of non-citizens were uninsured, as compared to less than 14 % of native-born Americans. Approximately 65 % of undocumented immigrants are believed to lack health insurance. The ACA is unlikely to reduce those rates, especially regarding undocumented immigrants. Neither, it is now seems, is DACA.