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.

Man Dies after Cowardly Battle with Cancer

(By Alex Smith, MD, cross posted from GeriPal)

Full credit to the Onion for the title idea for this post, and thanks to James Mittelberger, MD for the tip.

We’ve ranted before on GeriPal about the terminology used by medical professionals and the media to describe patients’ struggle with serious illness: Senator Kennedy loses the battle with cancer,  war on cancer, fighting the disease, etc.

The reason the Onion story is so funny is that it reduces the war metaphor to the absurd.  If the normative approach is to fight the disease, then what does that say about those who accept the seriousness of their condition?  It’s ridiculous to call someone who has come to terms with a poor prognosis, and chooses to focus on comfort rather than cure, a coward.  But that’s what our societies normative standards for approaching serious illness would imply.

I’ll conclude by quoting from Patrice Villars, NP original post on this topic:

How many times have we all heard that someone is “a fighter”, “a survivor”? The rest of us must be wusses. How often do we hear of use terminology that is (inadvertently) offensive to an individual or others? If we see advance illness as a ‘battle’, then there IS necessarily a loser. The implication is that we have full control over our disease process and even our survival if we just have the right attitude. This is a dangerous concept and one we shouldn’t perpetuate. There is so much out in the world telling us what we are supposed to do so we don’t get sick, let alone die. And when we do get sick, we are subtlely shunned as having self-created our own suffering. (“Well, she had a type A personality, you know.” “She never ate properly. I told her to eat only organic macrobiotic foods.” Or, one of my personal favorites, “I guess he just gave up.”)

‘Nuf said.

“Biotestament? Facebook can help you”

By Cristiane Avancini Alves

The question reproduced in the title was posed – last year – by the Italian newspaper “Corriere della Sera“, which described how an Italian association created an application in the social network that allows users to appoint two “testamentary executors” who can activate, in the event of the user’s death, the publication of a message previously chosen by him to be published in his profile. The service also enables users to send private messages to Facebook friends, as well as a final farewell to relatives, and a ‘biological testament’ can be viewed by all members of the network. The creators of the service understood that social networking can be a means of publicizing and thereby respecting a person’s choice regarding the medical treatment she wants to receive at the end of life. However, some problems can emerge – for example, incorrect completion of the virtual forms, which could lead to false communication and comments regarding the death of a user.

The publication in a social network of our “last wishes” passes through end of life decisions that were previously made in a personal and familiar atmosphere to different members, followers, and users of a social network. The point, here, is not if this is “good” or “bad”, but it does raise questions as to the new ways of publicizing elements that were circumscribed to our private life and how, when and why we are doing so.

In the U.S., well-known cases including Quinlan, Cruzan and Schiavo received strong media coverage, and in some cases led to legal change. The Patient Self-Determination Act (PSDA) was passed in the wake of Cruzan, followed by the Supreme Court’s recognition of constitutional protection of the right of patients to refuse treatment that sustains life, including food and water. U.S. and Italy both have numerous examples of legal battles bringing private cases into public light via the media. In Brazil, a recent Resolution of the Federal Board of Medicine addresses advance directives before any specific case being argued. However, there is no law about the subject in the country, and the discussions raised after publication of the cited Resolution were not well interpreted or spread by the Brazilian media. This is a subject that I want to develop in my next post. For now, it is clear that the conjugation of media and social information and responsible structuring of legal documents are fundamental tools to balance legal and bioethical results.

Twitter Round-Up (12/2-12/8)

By Casey Thomson
This week’s Twitter Round-Up features an “American Idol-style” selection of research grant winners, the problems facing children in Syria attempting to be vaccinated, and a review of where we stand with current patient health information privacy and security.
  • Michelle Meyer (@MichelleNMeyer) retweeted an article about a newly emerging landmark case in the United Kingdom. In the suit, a childless couple denied IVF funding due to the woman’s age is suing Health Secretary Jeremy Hunt (because he is “ultimately accountable for healthcare in England”) on the basis of age discrimination. Thought to be the first venture to sue the Health Secretary concerning decisions about this NHS fund rationing, this case also will be the first instance where age discrimination laws have been employed to try for fertility treatment. (12/3)
  • Alex Smith (@AlexSmithMD) shared an article about a problem patients must deal with when approaching post-hospitalization care: Medicare’s offer to pay for hospice care or for a Skilled Nursing Facility (S.N.F.), but only rarely at the same time. Not only does the choice create a financial predicament, but it also has extensive repercussions for the patient’s health. Calls for a combined benefit process between hospice/palliative care and S.N.F. have been made, including a proposed “concurrent care” demonstration project in the Affordable Care Act. (12/6)
  • Dan Vorhaus (@genomicslawyer) linked to a summary of the Ponemon Institute’s Third Annual Benchmark Study on Patient Privacy & Data Security, reporting on the challenges still being faced to safeguard protected health information (“PHI”). (12/6)
  • Michelle Meyer (@MichelleNMeyer) additionally retweeted a link explaining Brigham and Women’s Hospital’s attempt to deal with the rising difficulty of choosing which research grants to support: an “American Idol-style” public online voting. With almost 6,500 votes cast, the public engagement experiment picked a project hoping to research methods for integrating genomic sequencing into newborns’ routine medical care. When future grant holders are struggling to award between a set of equally deserving project proposals, this push for public involvement (after having confirmed scientific rigor) may have intriguing implications. (12/6)
  • Daniel Goldberg (@prof_goldberg) also linked to a study in Denmark testing the relationship between socio-economic status (SES) and blood pressure levels. Despite having a healthcare system that is free and equal-access regardless of factors like SES, the study found that SES had a “significant effect on BP [blood pressure] control” in this survey. (12/7)
  • Arthur Caplan (@ArthurCaplan) posted a report by UNICEF on the efforts by parents in the Syrian Arab Republic to get their children vaccinated. With many medical centers destroyed by the conflict, and with health practitioners having to operate and transport supplies in the dangerous environment, children have been unable to receive routine vaccinations for several months. This campaign aims to provide such vaccinations (specifically for measles and polio) to children, having advertised via churches, mosques, schools, television, and even by SMS to get greater coverage. (12/7)
  • Frank Pasquale (@FrankPasquale) included a book review of Pharmageddon by David Healy, a look at how pharmaceutical companies are excessively influencing the medical industry particularly with “diagnostic categories and clinical guidelines.” The result, according to Healy: a society where people “think about their bodies as a bundle of risks to be managed by drugs,” with a workforce that is “getting ‘sicker,'” and with “major pharmaceutical companies…banking on further overdiagnosis and overtreatment,” all “undermining universal health care.” (12/8)

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

The Capacity of Surrogate Decision-Makers

During my many years in healthcare as a clinician, researcher and hospital ethics consultant, I am dismayed by how little relative attention is given to ensuring that surrogate decision-makers (or “proxies”) have the “capacity” to make sound medical decisions for adult patients without decision-making capacity. Some attention has been given to this in the literature, but not a lot. And, practically, it is routine in most clinical situations to defer to a proxy without much assessment of his/her capabilities.

For example, it has been demonstrated through many empirical studies that family members experience high distress when loved ones are admitted to ICUs, quite understandably — many families experience such high distress that decision-making abilities can be compromised. Others, even if distress is well-managed, are simply not aware of the patients’ previously stated wishes, to enable them to make decisions based upon substituted judgment. And, still others may not know enough of the medical situation to make good decisions based upon the patient’s best interests. Then, sadly, we also have a portion of proxies who may not want to keep the best interests of the patient at heart — in fact, I have done research among people with cancer who are also suffering from domestic violence from their primary caregiver (and presumed proxy). In these situations, the proxy may actually want to cause harm to the patient. Or, another example is when the harm may not be intended, but the proxy makes decisions based upon their own needs. An example is a proxy who chooses to keep a person in a terminal condition on life-support for their own financial gain (for pension checks to keep coming, for example).

We need to pay more attention to the capabilities of health care proxies. For example, in addition to encouraging clinicians to assess patients’ decision-making capabilities, clinicians should also be assessing the proxies’ decision-making abilities – early in the process. However, to my knowledge, there are no clear methods, guidelines, policies or laws “removing” established proxies from their posts as decision-makers (aside from taking the person to court, which is often impractical), when their judgment seems compromised. Clinicians are often left without guidance. Perhaps folks in clinical bioethics can help establish some clear standards for proxy decision-making, which might serve as a guide for clinicians, but also for future policy development. Just some initial thoughts…

Training Doctors, The Importance of Tx Intensity and Patient Preferences?

The Dartmouth Atlas of Health Care recently published a report entitled, “What Kind of Physician Will You Be?: Variation in Health Care and Its Importance for Residency Training.” (2012; http://www.dartmouthatlas.org/pages/residency).  Briefly, this report analyzes Medicare data to create indexes and variables used to describe varying levels of treatment intensity, particularly at the end of life, for 23 top U.S. medical centers. This report is targeted to medical students who are choosing their residency programs, hoping that prospective residents look at a wider-array of factors, including: how well these hospitals utilize effective, proven health care interventions; to what extent the care they provide is dependent on supply-induced demand; and how well the hospitals allow for patient preferences in treatment plans.

This report grabbed my attention given that I conduct research in end-of-life (EOL) care, and I am sympathetic to efforts to improve the quality of care provided to people with advanced and terminal diseases. I am also quite interested in how our medical system can change the culture of medical care to provide higher-quality EOL, and to reduce the use of often ineffective and invasive medical interventions, particularly through hospitalization and ICU admissions. The education of residents seems like a good place to start in changing the current intensity and specialty-driven culture.

However, the gaps in this report compromise its arguments and potentially reduce its effectiveness. I will only highlight two here.

Read More

Twitter Round-Up (11/4-11/10)

By Casey Thomson

[Ed. Note. 11/12/12: Just to be clear, retweeting should not be read as an endorsement of or agreement with the content of the original tweet.]

With Election Day now come and gone, our bloggers were tweeting this week about the results, in addition to the greater happenings in health law and ethics. Read below for this week’s round-up:

  • Arthur Caplan (@ArthurCaplan) retweeted a post about the recent clinical trial done on chelation, a “fringe” heart disease treatment whose popularity often hinges on a patient’s distrust of conventional medicine. Evidence of the treatment’s effectiveness looks to be marginal, at best. (11/4)
  • Michelle Meyer (@MichelleNMeyer) retweeted an article that explained the problems in the intersection between neuroscience and law, namely how emerging technologies in neuroscience are not being used appropriately to understand criminal behavior. The author advocates for a renewed look at how neuroscience and law can work together, not only to evaluate defendants effectively, but also to customize plans that can serve the interests of both the defendant and the public. (11/5)
  • Dan Vorhaus (@genomicslawyer) linked to a new piece he co-authored on clinical data and genetics, entitled “The Next Controversy in Genetic Testing: Clinical Data as Trade Secrets?” (11/6)
  • Michelle Meyer (@MichelleNMeyer) aptly summarized the results of Massachusetts’ ballot questions with her tweet: “Sick folk in MA can now smoke pot but, it seems likely, not have the aid of their doc in controlling the timing & nature of their death.” (11/6)
  • Daniel Goldberg (@prof_goldberg) linked to a study done on children with epilepsy  and their families. Goldberg noted that the study’s results indicate a serious “ethically pernicious” problem that in fact worsens the condition of those afflicted with epilepsy more so than may be originally perceived: stigmatization. (11/7)
  • Frank Pasquale (@FrankPasquale) tweeted a blog post that talked of the need to increase the FDA’s power in order to curb the fungal meningitis outbreak now affecting individuals nationwide. Lamentations of the state-based system’s inability to handle the problem had undertones of concern for future situations similar to this one sprouting up again. (11/8)
  • Frank Pasquale (@FrankPasquale) also published a news update from Georgia, where legislators are ending the discount on license renewal prices that had previously been given to motorists who signed up to be organ donors. While many expressed fear that the policy would decrease the number of donors, others in the medical community admitted that there had been no demonstrated link between the policy and increases in donor sign-ups. (11/10)

Twitter Round-Up: What Our Bloggers Are Tweeting About (10/28-11/3)

By Casey Thomson
[Ed. Note: Several of our bloggers are active on Twitter.  In a new feature, we’ll be posting some highlights of their tweets each week so you can stay in the know – or think about following them directly!]
  • Dan Vorhaus (@genomicslawyer) linked to Bloomberg’s article on the current underutilization of genetic tests for Lynch Syndrome, responsible for potentially 3% of all cases of colon cancer. Authors Langreth and Lauerman note that the lack of testing is but one example of the tendency to avoid such tests due to “doctors’ ignorance and financial disincentives.” (10/29)
  • Daniel Goldberg (@prof_goldberg) shared Iona Heath’s article on the problematic nature of current breast cancer screening awareness programs, discussing how women are not given enough information to decide if the potential treatments that follow are indeed worth the psychological devastation often invoked. (10/30)
  • Michelle Meyer (@MichelleNMeyer) retweeted an editorial on medical genetic paternalism. The post by Razib Khan discussed how physicians deciding whether to tell parents about unforeseen genetic test results of their children can be considered not only an act of malpractice, but also morally wrong. (10/30)
  • Einer Elhauge (@elhauge) linked to a new review of his acclaimed book, Obamacare On Trial by the National Law Review. (10/31)
  • Daniel Goldberg also tweeted a review by Boddice of Javier Moscoso’s new book, Pain: A Cultural History. (10/31)
  • Arthur Caplan (@ArthurCaplan) linked to news about China’s promised initiative to reduce the dependence on death row inmates for organs. A new national organ donation system, based on a system previously piloted by the Red Cross Society of China, could take effect as soon as early 2013. (11/2)
  • Arthur Caplan also posted on the Vatican’s announcement to hold its second “International Adult Stem Cell Conference,” revisiting this complicated issue. (11/2)
  • Arthur Caplan additionally linked to a report on the debate and complications regarding feeding tube use, as published by Krieger of Mercury News. (11/2)

Art Caplan: MA Should Legalize Physician-Assisted Suicide

Weighing in on Question 2, Massachusetts’ ballot initiative on physician-assisted suicide, Art Caplan says we should vote “yes”:

Mass. should legalize physician-assisted suicide

Of the numerous ballot initiatives that will be decided at the state level on Tuesday, none is more hotly contested than the Massachusetts bill to decide whether to legalize physician-assisted suicide. The citizens of Massachusetts, my home state, should vote to legalize.

The proposed measure allows terminally ill patients to be given access to lethal drugs. A terminally ill patient is defined as someone with six months or less to live. The patient’s terminal diagnosis and mental competency must be attested to by two doctors. Patients would have to make a request to their doctor twice orally and once in writing. The written request would have to be witnessed.

Yet even with such restrictive conditions, opponents of the proposal say doctors should never, as a matter of professional ethics, intentionally hasten the death of one of their patients, even one who is terminally ill. The codes of medicine and nursing ethics reject helping patients die.

Keep reading…

Politics in Practice: Intense Conversations in Intensive Care

By Erin Talati

As Holly Lynch describes in her recent post, the upcoming election brings a number of bioethics questions directly to the public. Two of the three ballot questions in Massachusetts invite discussion and debate on the controversial issues of physician-assisted suicide and the medical use of marijuana. The introduction of these issues as ballot initiatives offers physicians the opportunity for rich discussion on important topics with their patients. But, how much should physicians and other health care providers share with patients regarding their own views on these issues?
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