“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.